tag:theconversation.com,2011:/fr/topics/hiv-aids-11623/articlesHIV/AIDS – The Conversation2024-03-14T23:25:51Ztag:theconversation.com,2011:article/2230052024-03-14T23:25:51Z2024-03-14T23:25:51ZLove, loss and tears – but also laughter: Belvoir’s compelling and skilful staging of Holding the Man<figure><img src="https://images.theconversation.com/files/582076/original/file-20240314-22-9tv5zm.JPG?ixlib=rb-1.1.0&rect=0%2C7%2C1281%2C1908&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Brett Boardman/Belvoir</span></span></figcaption></figure><p>Walking through Chippendale on my way to Sydney’s Belvoir Street Theatre, where this production of Holding the Man is playing, I pass by the York Theatre. This was the theatre where, in 1985, Timothy Conigrave, author of the original memoir upon which the play is based, was rehearsing a touring show of Neil Simon’s Brighton Beach Memoirs. He had to excuse himself from one rehearsal for an appointment where he learned his HIV-positive diagnosis. </p>
<p>Then, walking up the hill to Surry Hills, I get to the Belvoir Street Theatre itself. Five years after that initial diagnosis, Conigrave’s play, Thieving Boy, was getting its first rehearsed reading at the Belvoir. He wasn’t able to attend because he’d been kept in hospital with <em>Pneumocystis</em> pneumonia, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907978/">PCP</a>, an AIDS-defining illness.</p>
<p>To watch this revival of Tommy Murphy’s beautifully crafted adaptation of Conigrave’s memoir at the Belvoir is to inhabit spaces that are filled with the book’s memories. </p>
<p>One of the things that memoir can do is to hold a space open for memories to live on in the world, personal memories that would otherwise be lost. Conigrave’s 1995 book, Holding the Man, is a rare gift, perfectly capturing what it was like to grow up gay in the decades just before the arrival of HIV. </p>
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Read more:
<a href="https://theconversation.com/holding-the-man-and-bringing-hiv-aids-in-australia-to-a-mainstream-audience-43250">Holding the Man, and bringing HIV/AIDS in Australia to a mainstream audience</a>
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<h2>Noticing the small things</h2>
<p>At the book’s heart is a joyous love story between Tim and his high school sweetheart, John Caleo. There is, of course, the overarching trajectory of John’s death and the impact of HIV on their friends and families. But the book works its remarkable magic on a reader by disarming you with the tiny details of somebody’s life.</p>
<p>It is the small things that are often the most affecting in Conigrave’s writing: what people were wearing, what they were listening to, how they looked in certain turns of the light, the awkwardness and fun of sex, what made them smile or laugh.</p>
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<a href="https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Actors on stage" src="https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/582077/original/file-20240314-30-o1sneg.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Tom Conroy is superb in the central role.</span>
<span class="attribution"><span class="source">Brett Boardman/Belvoir</span></span>
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<p>Eamon Flack’s production captures well – and with a lovely, light touch – this sense of fleeting memories that are, nevertheless, still available to us. Tom Conroy is superb in the central role. He takes us from nine-year-old Tim to grieving lover with all of the empathy and playfulness that the part requires. Neither Conigrave’s book nor Murphy’s script shy away from Tim’s flaws; he is, at times, petulant and selfish, but always charming, recognisable and human. </p>
<p>Conroy is joined by a wonderful cast: Danny Ball as John, his lover, but also an ensemble of four performers (Russell Dykstra, Rebecca Massey, Guy Simon and Shannen Alyce Quan) who cycle through all the other people in Tim’s life. They are all great, but special mentions for Massey who wears more wigs than Cher and revels in every part. Guy Simon’s two appearances as a schoolfriend’s mum are also an absolute joy.</p>
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<a href="https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="The cast dance on a pink stage." src="https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/582078/original/file-20240314-20-vsrtmi.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Eamon Flack’s production balances tears and laughter.</span>
<span class="attribution"><span class="source">Brett Boardman/Belvoir</span></span>
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<p>The wit, charm and love of the opening act (schoolboy crushes, dancing, music and a lot of laughter) are balanced well with the pathos of the second half (the endurance of love, loss and tears, but also more laughter). Flack’s direction knits together the constant shifts in focus – an essential part of memoir and of memory plays – with an ease that only seems effortless; this is a compelling and skilful use of stage and script.</p>
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Read more:
<a href="https://theconversation.com/class-queerness-and-illness-in-the-post-crisis-era-rewriting-the-narrative-of-hiv-176466">Class, queerness and illness in the ‘post-crisis’ era: rewriting the narrative of HIV</a>
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<h2>A timely reminder</h2>
<p>This is also a production that knows it is addressing an audience in 2024, not in 1995, when Conigrave’s book was first published, nor in 2006 when Murphy’s adaptation was first staged. We’ve lived through a lot since, not only the bruising marriage equality vote in Australia, but also a global sense that the lives of queer people might be newly under threat. </p>
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<a href="https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&rect=1%2C0%2C1275%2C1913&q=45&auto=format&w=1000&fit=clip"><img alt="Two men kiss" src="https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&rect=1%2C0%2C1275%2C1913&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=899&fit=crop&dpr=1 600w, https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=899&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=899&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1130&fit=crop&dpr=1 754w, https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1130&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/582075/original/file-20240314-22-ffziqi.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1130&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">This production captures the sense of fleeting memories.</span>
<span class="attribution"><span class="source">Brett Boardman/Belvoir</span></span>
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<p>The lives and loves of gay men, our friends and families, are unavoidably threaded through (pulled apart and drawn together) by what happened in the 1980s and 1990s. This production is an important and timely reminder of what was lost, what was gained, and of the precious memories that we need to keep alive.</p>
<p>On the day of the opening night, the NSW parliament was hearing the first reading of a bill that would <a href="https://www.abc.net.au/news/2024-03-13/gay-conversion-therapy-nsw-parliament-explainer/103580746">outlaw gay conversion practices</a>, the victims of which testify to its corrosive and violent impact on their lives. </p>
<p>Here’s hoping the ban on such practices is one more step in restoring joy to the lives of queer kids in our city and state. </p>
<p><em>Holding the Man is at Belvoir, Sydney, until April 14.</em> </p>
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Read more:
<a href="https://theconversation.com/treatments-as-torture-gay-conversion-therapys-deep-roots-in-australia-95588">'Treatments' as torture: gay conversion therapy's deep roots in Australia</a>
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<img src="https://counter.theconversation.com/content/223005/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Huw Griffiths does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Eamon Flack’s production captures well – and with a lovely, light touch – the sense of fleeting memories that are, nevertheless, still available to us.Huw Griffiths, Associate Professor of English Literature, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2225302024-02-07T16:00:22Z2024-02-07T16:00:22ZAll of Us Strangers: coming to terms with the grief and trauma of being gay in the 1980s<p><em><strong>Warning: this article contains spoilers.</strong></em></p>
<p>A powerful film about intimacy, grief and gay identity, <a href="https://www.bfi.org.uk/sight-and-sound/reviews/all-us-strangers-andrew-haighs-glorious-magic-realist-meditation-grief">All of Us Strangers</a> – featuring outstanding performances by Andrew Scott as Adam and Paul Mescal as Harry – can only be properly appreciated in the context in which it was produced. </p>
<p>In a recent <a href="https://irep.ntu.ac.uk/id/eprint/49215/">article</a> I co-authored with the film studies academic <a href="https://www.liverpool.ac.uk/communication-and-media/staff/gary-needham/">Gary Needham</a> on post-millennial LGBTQ+ film-making in the UK, we argued that there is no collective movement or recognisable trend that can be called British queer cinema.</p>
<p>LGBTQ+ representations in British film-making manage to cross over different styles and genres. However, such wide visibility risks compromising the potential of LGBTQ+ films as a political force of collective dissent against homophobia and transphobia. In other words, mainstream representation may evade new agendas of LGBTQ+ activism. </p>
<p>Three areas have tended to dominate the past three decades of queer representation in British film.</p>
<p><strong>1.</strong> Reclaiming LGBT heritage and history – including films such as <a href="https://www.theguardian.com/film/2019/jul/04/vita-virginia-review-gemma-arterton-elizabeth-debicki-isabella-rossellini">Vita and Virginia</a> (2018), <a href="https://www.theguardian.com/film/2018/dec/30/the-favourite-review-olivia-colman-emma-stone-rachel-weisz-yorgos-lanthimos">The Favourite</a> (2018), and <a href="https://www.theguardian.com/film/2020/sep/12/ammonite-review-kate-winslet-saoirse-ronan-mary-anning-fossils-lyme-regis-francis-lee">Ammonite</a> (2020).</p>
<p><strong>2.</strong> Reinterpreting British cinema’s legacy of social realism and <a href="https://www.oxfordreference.com/display/10.1093/acref/9780199587261.001.0001/acref-9780199587261-e-0533">poetic realism</a> – think of <a href="https://www.criterion.com/current/posts/2426-weekend-the-space-between-two-people">Weekend</a> (2011), <a href="https://www.theguardian.com/film/2017/jan/22/gods-own-country-review-a-dales-answer-to-brokeback-thats-a-very-british-love-story">God’s Own Country</a> (2017), and <a href="https://www.theguardian.com/film/2014/sep/14/pride-film-review-mark-kermode-power-in-unlikely-union">Pride</a> (2014).</p>
<p><strong>3.</strong> Making visible LGBTQ+ migrant identities, as seen in films such as <a href="https://www.theguardian.com/film/2012/nov/08/my-brother-the-devil-review">My Brother the Devil</a> (2012), <a href="https://wlwfilmreviews.com/ninas-heavenly-delights/">Nina’s Heavenly Delights</a> (2006), <a href="https://player.bfi.org.uk/rentals/film/watch-i-cant-think-straight-2009-online">I Can’t Think Straight</a> (2008), and <a href="https://www.theguardian.com/film/2020/sep/24/monsoon-review-henry-golding-vietnam-family-drama">Monsoon</a> (2019). </p>
<p>Rather than leading to a politically and aesthetically distinct trend or wave, these films relay queerness in significantly different ways. Film historian Robin Griffiths <a href="https://doi.org/10.3366/jbctv.2016.0342">argues</a> that the “post-Thatcher” trajectory of British queer cinema is like “a journey without direction”, saying: “The struggles and oppressions that were so key to the radical currency of earlier iconic queer filmmakers such as <a href="https://www.kcl.ac.uk/people/derek-jarman">Derek Jarman</a> seemingly no longer hold the same social and political charge.”</p>
<p>For Griffiths, the “post-Jarman” British queer film demonstrates a shift towards a different set of aesthetic and political concerns, which were shaped by aspirations for inclusion and visibility. Griffiths also argues that this shift in LGBTQ+ culture is a departure from the radically political energy of Derek Jarman and his generation of activists.</p>
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<h2>Ghosts of the past</h2>
<p>However, after I watched <a href="https://www.theguardian.com/film/2024/jan/28/all-of-us-strangers-review-andrew-haigh-andrew-scott-paul-mescal">All of Us Strangers</a> (2023), the trajectory of director <a href="https://www.andrewhaighfilm.com">Andrew Haigh’s</a> work – from <a href="https://www.theguardian.com/film/2009/sep/04/greek-pete-film-review">Greek Pete</a> (2008) and <a href="https://www.criterion.com/current/posts/2426-weekend-the-space-between-two-people">Weekend</a> (2011) to <a href="https://www.theguardian.com/film/2015/aug/30/45-years-charlotte-rampling-tom-courtenay-review-mark-kermode">45 Years</a> (2015) and the HBO series <a href="https://variety.com/2014/tv/reviews/tv-review-hbos-looking-1201050482/">Looking</a> (2014-5) – started making more sense.</p>
<p>I came to realise that Haigh’s latest film is telling us a complex story of love, grief and attachment that is a product of the director’s evolving yet consistent commitment to a cinema of intimacy – a form of authorship that I have been struggling to locate in contemporary British LGBTQ+ film culture. </p>
<p>Most characters in Haigh’s films yearn for connection and intimacy and drift in and out of relationships. While the couples of Weekend (Glen and Russell) and 45 Years (Kate and Geoff) question their faith in and longing for monogamous coupledom, All of Us Strangers expands this question of intimate attachment to a new, piercingly existential level.</p>
<p>The film starts with Adam (Andrew Scott) working in his flat, located in a near-empty tower block in London. Harry (Paul Mescal), a mysterious neighbour, knocks on Adam’s door and starts flirting with him. As their relationship develops, Adam is preoccupied with the memories of his past.</p>
<p>He starts visiting his childhood home in Croydon, where he meets his dead parents (Claire Foy and Jamie Bell) who, as apparitions, appear to be living there just as they were on the day they died in a car crash 30 years ago. </p>
<p>From a near-empty tower block to a suburban house of ghosts, the unpopulated cityscape in the film feels like a parallel, dream-like universe that we are invited to experience through Adam’s navigation of loss and grief.</p>
<p>Two cryptic conversations reveal the film’s deliberate ambiguity of where we are. “How do you cope?” Harry asks, meaning not only the quietness of the apartments they live in but also the lonely realm of alternative reality Adam’s mental state creates through grief.</p>
<p>In another conversation, when Adam reveals he lost his parents in a car crash and tells Harry he shouldn’t be sorry because it happened 30 years ago, Harry says: “I don’t think that really matters.” Grief is a life-long process: the resolution (or redemption) is not in moving on but in walking with and acknowledging its manifestations. </p>
<p>As a gay man in his late 40s, carrying the generational trauma of the HIV/AIDS crisis, Adam talks to the ghosts of his “younger” parents about his childhood and his sexuality. Avoiding confrontation, Adam’s conversations with them evoke a different kind of wisdom, that of a deeply reflective, other-worldly older self, which ends up feeling a form of forgiving compassion for the now younger vulnerable selves of his lost parents.</p>
<p>With this, Haigh’s universe of apparitions does not expose a trauma-induced nightmare but offers a powerful remedy for an ageing generation of gay men and their coming to terms with grief and trauma. Without grief resolved, there is no love. And without love, there is no grief resolved.</p>
<p>The powerful ending of the film makes us wonder if everybody in the story was a ghost, or if that matters at all. As Haigh also <a href="https://www.facebook.com/watch/?v=886382096547215">says</a>, “in the end, it’s all about love”. Haigh’s account of love in the film transcends life and death. We are invited to embrace not a closure but a loving opening, through the acknowledgement of our ultimate orphanhood. </p>
<p>Distinctly more mature and relevant than Weekend’s formula of gay romance shaped around the <a href="https://irep.ntu.ac.uk/id/eprint/37730/">monogamy v promiscuity divide</a>, the depiction of love and grief in All of Us Strangers offers a beautiful response to contemporary queer culture and its crisis of intimacy.</p>
<p>I watched it with a friend who afterwards said something that really resonated with me: “It felt like one of the truest depictions of growing up gay in the 1980s and 1990s.”</p>
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<p class="fine-print"><em><span>Cüneyt Çakırlar does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Haigh’s ghostly, dream-like setting offers a powerful remedy for an ageing generation of gay men coming to terms with the grief that pervaded their young lives.Cüneyt Çakırlar, Associate Professor in Film and Visual Culture, Nottingham Trent UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2189182023-12-01T13:38:30Z2023-12-01T13:38:30ZWho is still getting HIV in America? Medication is only half the fight – homing in on disparities can help get care to those who need it most<figure><img src="https://images.theconversation.com/files/562804/original/file-20231130-23-mq7ite.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2119%2C1414&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Access to life-saving HIV prevention medications varies by race and other sociodemographic factors.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/aids-awareness-red-ribbon-royalty-free-image/1445701859">David Talukdar/Moment via Getty Images</a></span></figcaption></figure><p>As the globe marks another <a href="https://www.who.int/campaigns/world-aids-day/world-aids-day-2023">World AIDS Day</a> on Dec. 1, it’s crucial to both acknowledge the significant strides made in the global battle against HIV and recognize the persistent challenges that remain. While the United States had seen a <a href="https://www.cdc.gov/hiv/statistics/overview/ataglance.html">slow decline</a> in the overall number of new HIV infections from 2017 to 2021, a closer look at the data reveals <a href="https://www.cdc.gov/hiv/statistics/overview/in-us/incidence.html">persistent disparities</a> largely borne by LGBTQ people and <a href="https://theconversation.com/use-of-hiv-prevention-treatments-is-very-low-among-southern-black-gay-men-170794">communities of color</a>.</p>
<p>As a <a href="https://scholar.google.com/citations?user=DbZMkzUAAAAJ&hl=en">social epidemiologist</a> who proudly identifies as a gay Latino, I have a vested interest both personally and professionally in understanding and addressing the HIV disparities my communities face. It’s disheartening to realize that, despite available medical advances that can end the AIDS epidemic, these resources aren’t reaching those who need them the most.</p>
<h2>Tools in the HIV prevention arsenal</h2>
<p>When HIV/AIDS first emerged in the U.S. in the 1980s, <a href="https://www.hiv.gov/hiv-basics/overview/history/hiv-and-aids-timeline/">condoms were the only prevention strategy</a> available other than behavioral changes like abstinence. Since then, the development of effective medications has made it possible to live with HIV.</p>
<p>In the 1990s, researchers adopted the model of “<a href="https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/arv-therapy-as-prevention">treatment as prevention</a>,” which recognized that an HIV-positive person with a reduced viral load from taking their antiviral therapy medications had a lower likelihood of passing the virus to their sexual partners. This messaging was changed in recent years to <a href="https://www.idsociety.org/science-speaks-blog/2021/u--u-the-evidence-is-in.-spreading-the-word-that-undetectable--untransmissable-is-the-next-crucial-step/">“undetectable = untransmittable,” or U=U</a>, when a landmark study concluded that people living with HIV who are virally suppressed, or undetectable, through medications are not able to pass the virus on to a sexual partner.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/8q21PG1CdNs?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">People who have undetectable levels of the virus are deemed to have untransmittable HIV.</span></figcaption>
</figure>
<p>In 2005, researchers introduced <a href="https://www.hiv.uw.edu/go/prevention/nonoccupational-postexposure-prophylaxis/core-concept/all">non-occupational postexposure prophylaxis, or nPEP</a>, which aimed to prevent infection in someone exposed to HIV by initiating antiviral therapy. </p>
<p>In 2012, the U.S. Food and Drug Administration approved the first <a href="https://www.hiv.uw.edu/go/prevention/preexposure-prophylaxis-prep/core-concept/all">preexposure prophylaxis, or PrEP</a> drug, which is an antiviral therapy that someone who has not been exposed to HIV takes daily to prevent infection. In 2021, the FDA approved the use of a <a href="https://www.hiv.uw.edu/go/prevention/preexposure-prophylaxis-prep/core-concept/all#recommended-regimens-dosing-hiv-prep-long-acting-injectable-">long-acting, injectable form of PrEP</a>, providing an alternative to daily pills. </p>
<p>While medical advancements have enhanced the options to prevent HIV, many aren’t reaching the people they are intended to treat. Of the estimated <a href="https://www.cdc.gov/hiv/group/racialethnic/other-races/prep-coverage.html">1.2 million people eligible for PrEP in the U.S.</a>, only 30% received a prescription in 2021.</p>
<h2>Racial disparities</h2>
<p>Gay and bisexual men continue to comprise around <a href="https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics/">two-thirds of new HIV infections</a> in the U.S. <a href="https://www.cdc.gov/hiv/policies/data/transgender-issue-brief.html">Transgender people</a>, <a href="https://www.vice.com/en/article/pkgnny/homeless-hiv-treatment">people who inject drugs</a> and <a href="https://www.cdc.gov/hiv/group/sexworkers.html">sex workers</a> also have disproportionate new infection rates. But cases are not distributed evenly by race. </p>
<p>The Centers for Disease Control and Prevention’s 2021 HIV Surveillance Report on groups at risk of HIV in 13 U.S. cities found that <a href="https://www.cdc.gov/hiv/pdf/library/reports/cdc-hiv-surveillance-special-report-number-31.pdf">nearly 80% of gay and bisexual men</a> engaged in condomless anal sex, with higher rates among white men than among both Black and Latino men.</p>
<p>However, between 2015 and 2019, white gay and bisexual men experienced a <a href="https://www.cdc.gov/hiv/group/msm/msm-content/diagnoses.html">17% decrease in HIV cases</a>. Black and Latino gay and bisexual men experienced no significant reductions. This is likely due to disparities in access to HIV prevention medication. Among those who were HIV negative, <a href="https://www.cdc.gov/hiv/pdf/library/reports/cdc-hiv-surveillance-special-report-number-31.pdf">only a little over 40% had used PrEP</a> in the past 12 months, with white men reporting higher use than both Black and Latino men. Among those who were HIV positive, 95% were actively using antiviral therapy, and there was little variation by race.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Hand holding orange PrEP pills above a clothed table with an open pill bottle" src="https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/562805/original/file-20231130-25-n3chgy.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The first PrEP drug was approved in 2012, but access remains uneven across the U.S.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/young-latina-woman-taking-medicine-royalty-free-image/1320349143">Sara Jurado/E+ via Getty Images</a></span>
</figcaption>
</figure>
<p>Factors such as stigma, lack of access to and mistrust in health care, socioeconomic status, and cultural nuances that restrict access to PrEP likely contribute to the unchanging HIV burden <a href="https://www.cdc.gov/hiv/group/bmsm/prevention-challenges.html">Black</a> and <a href="https://www.cdc.gov/hiv/group/gay-bisexual-men/hispanic-latino/prevention-challenges.html">Latino</a> men, <a href="https://www.cdc.gov/hiv/policies/data/transgender-issue-brief.html#systemic-factors-that-contribute">trans people</a> and <a href="https://www.vice.com/en/article/pkgnny/homeless-hiv-treatment">people experiencing homelessness</a> face.</p>
<h2>Closing the PrEP access gap</h2>
<p>A recent systematic review of 42 different interventions to promote PrEP among gay and bisexual men in the U.S. found that the most promising involve addressing <a href="https://doi.org/10.1186/s12981-022-00456-1">various social and environmental factors</a> that restrict access and adherence. </p>
<p>Tackling access barriers at the community and health care levels can enhance public health initiatives to expand PrEP access, including addressing issues like stigma and medical mistrust. This can help effectively promote PrEP use among Black and Latino gay and bisexual men and reduce racial disparities in HIV infections.</p>
<p>It is also important to note that while HIV disproportionately affects certain groups, <a href="https://www.cdc.gov/hiv/group/racialethnic/africanamericans/diagnoses.html">people having heterosexual sex</a> are still at risk and need to be part of the HIV prevention solution.</p>
<p>World AIDS Day serves as a poignant reminder that the fight against HIV is not only a global endeavor but also one that requires a nuanced understanding of the unique challenges different communities face. Addressing disparities and tailoring interventions can help move humanity closer to a world where HIV is no longer a pervasive threat.</p><img src="https://counter.theconversation.com/content/218918/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Angel Algarin receives funding from the National Institutes of Health. </span></em></p>Two-thirds of new HIV infections are among gay and bisexual men. Although cases have decreased among white men, they have stagnated among communities of color.Angel Algarin, Assistant Professor of Health Promotion and Disease Prevention, Arizona State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2187152023-12-01T00:25:18Z2023-12-01T00:25:18ZA Kid Called Troy at 30: this beautiful Aussie film was one of the most important HIV/AIDS documentaries ever produced<figure><img src="https://images.theconversation.com/files/562837/original/file-20231130-19-ywh7v3.png?ixlib=rb-1.1.0&rect=1%2C1%2C955%2C665&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">NFSA</span></span></figcaption></figure><p>Since 1988, <a href="https://www.worldaidsday.org.au/about/about-world-aids-day">World AIDS Day</a> has been held each year on December 1. This World AIDS Day, we’re reflecting on one of the most important HIV/AIDS documentaries ever produced: <a href="https://www.screenaustralia.gov.au/the-screen-guide/t/a-kid-called-troy-1993/6902/">A Kid Called Troy</a>, released in Australia 30 years ago.</p>
<p>The film tells the story of Troy Lovegrove, a seven-year-old Australian boy who became HIV-infected during birth, and the support and advocacy of his father, Vince Lovegrove. The story of Troy’s mother, Suzi Lovegrove, and her experience with HIV/AIDS had been documented in 1987’s <a href="https://www.youtube.com/watch?v=tQZ_9xFp3Fc">Suzi’s Story</a>, released the same year Suzi died.</p>
<p>The two films mark a significant moment in the cinematic history of health communication. Their agenda – unquestionably progressive for the time – was to document the family’s struggle against systemic injustice and social discrimination, and to centre attention on their story, told in their own words, with authority and agency. </p>
<p>The documentaries promote support and understanding in the place of rampant victimisation, erasure and neglect, just as the Lovegroves had achieved within their own community.</p>
<h2>‘Triumphant testimony’</h2>
<p>The made-for-television documentary tells Troy’s story through direct-to-camera interviews with Troy, Vince and others in their circle. </p>
<p>The crew, under director Terry Carlyon, were careful to build close bonds with the family prior to introducing any filming equipment. This ease and honesty is evident in the way Troy and Vince open up to the camera and thus directly to the viewer, sharing private thoughts on their experiences. </p>
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<p>While the film is focused on Troy as a child with HIV, the emphasis is placed – perhaps for the first time – on living with HIV, rather than dying from it. We see Troy’s ordinary life at home with his father and sister, attending school, gymnastics and doctor’s appointments.</p>
<p>The Age praised the film’s “deeply moving and inspiring” content, “gigantic courage” and “blushingly intimate portrait of private joy and torment”. The ratings report for the week called for the ABC to “repeat this triumphant testimony to the human spirit – and soon”. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/ending-hiv-in-children-is-way-off-target-where-to-focus-action-now-162351">Ending HIV in children is way off target: where to focus action now</a>
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</em>
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<h2>‘A minority within a minority’</h2>
<p>The films are a testament to the human spirit. But they are also important works of activism, advocacy and education. </p>
<p>In A Kid Called Troy, a local woman from a rural community in Arnhem Land, which Troy and Vince regularly visited as part of their outreach work, observes “AIDS doesn’t discriminate”. </p>
<p>Suzi became infected with HIV after a “casual affair” with a man in New York. Not yet aware of this, she passed the virus on to Troy at birth.</p>
<iframe src="https://www.facebook.com/plugins/video.php?height=409&href=https%3A%2F%2Fwww.facebook.com%2Fnfsaa%2Fvideos%2F1792911947386321%2F&show_text=false&width=560&t=0" width="100%" height="409" style="border:none;overflow:hidden" scrolling="no" frameborder="0" allowfullscreen="true" allow="autoplay; clipboard-write; encrypted-media; picture-in-picture; web-share"></iframe>
<p>These films widened the common cultural understanding of who might be affected by HIV/AIDS. They made clear that, without preventive education and awareness-raising of how the virus works, suffering and stigma will continue. </p>
<p>By focusing on the experiences of an ordinary mother and her child, the films gave viewers an experience they could recognise, rather than insisting on the fundamental “difference” of people living with HIV.</p>
<p>As <a href="https://catalogue.nla.gov.au/catalog/1354595">Vince said</a>:</p>
<blockquote>
<p>Suzi wanted to get into people’s minds and souls and make them aware of what AIDS-fear was doing to our community. She wanted to let people know what life had been like as a minority within a minority.</p>
</blockquote>
<h2>AIDS prevention and education</h2>
<p>The year Suzi’s Story was released so was the infamous <a href="https://www.youtube.com/watch?v=OJ9f378T49E">Grim Reaper campaign</a>. </p>
<p>Although the advertisement was part of a <a href="https://www.screenaustralia.gov.au/the-screen-guide/t/rampant--how-a-city-stopped-a-plague-2007/25525/">wider policy</a> more transparent and innovative than those that had come before, the campaign relied on fearmongering as a primary strategy. </p>
<p>The commercial, part of a A$3 million national educational campaign, did not specify how HIV/AIDS could be contracted or transmitted, or the prevention and support strategies available. This fuelled a <a href="https://www.bandt.com.au/inquiry-told-famous-grim-reaper-aids-ad-contributed-to-significant-violence-against-gay-people/">moral panic</a> that targeted gay men, in particular those living with HIV and those who injected drugs. </p>
<p>The stigma associated with HIV made the programming of prevention education difficult. In 1987, Ted Coleman’s story in <a href="https://nakedeyeproductions.com/films/living-with-aids/">Living with Aids</a> aired on WBZ-TV in Boston without commercials because the television station was unable to find a sponsor.</p>
<h2>‘A beautiful brief flash’</h2>
<p>A Kid Called Troy stands apart from other HIV/AIDS films of the time because it was concerned with quality of life rather than the spectre of death. It brought Troy’s life into mainstream attention through the accessibility and domesticity of a family-centred television documentary. </p>
<p>It was a landmark moment in the popular depiction of HIV/AIDS.</p>
<p>Troy’s life, in his sister Holly’s words, was “a beautiful brief flash”. He died at the age of seven, just three months before the film was aired.</p>
<p>In his film, Troy’s relentless optimism and zest for life, combined with his father’s unswerving determination, leaves us with the promise of hope, and even the audacity to laugh. In one scene, Troy asks his father, “My video’s going to win more awards than mummy’s, isn’t it dad?”</p>
<p>He seemed to understand his legacy was the very act of understanding itself – comprehension rather than apprehension, compassion above all else.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/ending-hiv-as-a-public-health-threat-3-essential-reads-195477">Ending HIV as a public health threat – 3 essential reads</a>
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</em>
</p>
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<img src="https://counter.theconversation.com/content/218715/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Gildersleeve received funding from the Queensland World AIDS Day Alliance under the Queensland World AIDS Day Regional Grants, in collaboration with Queensland Positive People and the Inclusive Counselling Collective.</span></em></p><p class="fine-print"><em><span>Amy Mullens consults for Queensland Positive People and Mind Evolution Centre.
Amy Mullens has received external funding to conduct HIV-related research from Australian Government Department of Health: Activities to Support the National Response to Blood Borne Viruses (BBV) and Sexually Transmissible Infections (STI); Gilead Sciences, Inc; HIV Foundation Queensland; and the Sexual Health Research Fund (an initiative of the Sexual Health Ministerial Advisory Committee, funded by Queensland Health; administered by ASHM).
Amy Mullens is a member of the Australian Psychological Society-APS (including the College of Health Psychologists-CHP and College of Clinical Psychologists); and has served in a voluntary capacity on the APS CHP National Executive Committee.
Amy Mullens is a member of the Sexual Health Society Queensland, ASHM and GANQ.
Amy Mullens serves as a grant assessor on large health and medical research funding panels.
Amy Mullens serves as an ad hoc reviewer for several peer-reviewed journals in Sexual Health/HIV; and serves as a peer reviewer for abstract submissions for National and International Sexual Health/HIV conferences.</span></em></p><p class="fine-print"><em><span>Tait Sanders has friendships with members of the Lovegrove family.</span></em></p><p class="fine-print"><em><span>Annette Brömdal and Kate Cantrell do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The film tells the story of Troy Lovegrove, a seven-year-old Australian boy who became HIV-infected during birth.Jessica Gildersleeve, Professor of English Literature, University of Southern QueenslandAmy Mullens, Professor and Clinical & Health Psychologist, University of Southern QueenslandAnnette Brömdal, Senior Lecturer in Sport, Health and Physical Education, University of Southern QueenslandKate Cantrell, Senior Lecturer — Writing, Editing, Publishing, University of Southern QueenslandTait Sanders, Researcher, University of Southern QueenslandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2168762023-11-08T14:09:06Z2023-11-08T14:09:06ZCan HIV be cured using gene editing? We will soon find out<figure><img src="https://images.theconversation.com/files/558029/original/file-20231107-23-m91tyr.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5668%2C3937&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/editing-dna-chains-concept-genome-modification-2375332825">Andrii Yalanskyi/Shutterstock</a></span></figcaption></figure><p>HIV, the virus that causes Aids, was first <a href="https://www.who.int/news-room/spotlight/why-the-hiv-epidemic-is-not-over#:%7E:text=The%20HIV%20virus%20was%20first,situation%20and%20initiated%20international%20surveillance.">identified in 1983</a>. To catch this virus was initially a death sentence, but today, thanks to antiretroviral drugs, it can be kept in check. However, there is still no cure. </p>
<p>A small biotech company in San Francisco called Excision BioTherapeutics is trying to change that with its infusion, called EBT-101. The company <a href="https://www.globenewswire.com/news-release/2023/10/25/2766525/0/en/Excision-BioTherapeutics-Presents-Positive-Interim-Clinical-Data-from-Ongoing-Phase-1-2-Trial-of-EBT-101-for-the-Treatment-of-HIV-at-ESGCT-30th-Annual-Congress.html">recently reported</a> positive results on the one-off gene-editing treatment – but only regarding safety. There were no severe side-effects in the three patients given the experimental drug. </p>
<p>We will have to wait till 2024 for the first report on efficacy.</p>
<p>Despite the availability of antiretroviral drugs, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8864516/">hundreds of thousands</a> of people still die from Aids each year. A cure for the disease is sorely needed.</p>
<h2>Small but wily</h2>
<p>HIV, like all viruses, is made of genetic material and a shell. It is about a quadrillion times <a href="https://www.pnas.org/doi/10.1073/pnas.2303077120">smaller than a human body</a> and is an expert at dodging the immune system’s defences. </p>
<p>The treatment developed by Excision BioTherapeutics uses <a href="https://theconversation.com/nobel-prize-two-women-share-chemistry-prize-for-the-first-time-for-work-on-genetic-scissors-147721">gene-editing technology called Crispr</a> to seek out and disable the virus by cutting large sections of its DNA, which prevents it from replicating.</p>
<p>Crispr is an idea copied from our microscopic ancestors, the bacterial cells. This versatile tool against viruses, efficiently used by bacteria for millions of years to defend themselves, is now ready to protect humans from viral threats. </p>
<p>Crispr is like a miniature robot that can be directed to desired locations on genetic material within a living cell or outside. It can be used for <a href="https://www.frontiersin.org/articles/10.3389/fcell.2021.699597/full">curing diseases</a>, developing <a href="https://www.synthego.com/blog/crispr-agriculture-foods#:%7E:text=CRISPR%20gene%20editing%20technology%20has,to%20a%20store%20near%20you.">new types of crops</a>, and keeping an eye on how infectious <a href="https://www.nature.com/articles/s41551-021-00760-7">diseases spread</a>.</p>
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<figcaption><span class="caption">How Crispr works.</span></figcaption>
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<p>It has been 35 years since Crispr was <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5847661/">first discovered</a>, but in the last ten years, the technology has made significant progress, especially in treating inherited diseases, such as <a href="https://www.npr.org/sections/health-shots/2023/03/16/1163104822/crispr-gene-editing-sickle-cell-success-cost-ethics">sickle cell disease</a>. The US Food and Drug Administration is expected to decide on the approval of Crispr for sickle cell therapy in December.</p>
<h2>We need a cure</h2>
<p>As of December 2022, nearly 30 million people were receiving antiretroviral drugs for HIV, which is a significant increase from 7.7 million in <a href="https://www.un.org/en/global-issues/aids#:%7E:text=Since%20the%20start%20of%20the,million%20people%20living%20with%20HIV.">2010</a>. Although these drugs are life-savers, they can induce side-effects, such as blocked arteries of the <a href="https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-heart-disease">heart</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952282/">neurodegenerative disorders</a>.</p>
<p>Viruses and the organisms they infect have been at war for billions of years. The human body is a fortress guarded by layers of protection, so HIV uses several tactics to escape the sophisticated immune attack of the human body. One strategy is to remain hidden within the very same immune cells, called <a href="https://news.weill.cornell.edu/news/2020/04/hiv-hides-in-immune-system-cells-resistant-to-killer-t-cells">T cells</a>, that are designed to attack it. The virus can remain dormant in these cells for long periods, waiting for suitable conditions <a href="https://www.nih.gov/news-events/nih-research-matters/new-strategies-drive-hiv-cellular-hiding-places">to replicate</a>.</p>
<p>The virus also makes mistakes in its genetic material when replicating, giving rise to thousands of mutant varieties. This makes it very <a href="https://www.who.int/news-room/fact-sheets/detail/hiv-drug-resistance">difficult to develop drugs</a> against the threatening disease. However, Crispr is designed to attack the core of the virus, increasing the chance of disabling it.</p>
<p>Researchers have been focusing on enhancing Crispr tools and their delivery to HIV-infected cells to directly target and remove the integrated viral DNA from the host <a href="https://www.nature.com/articles/s41467-022-29346-w">immune cell’s</a> genome. </p>
<h2>From animals to humans</h2>
<p>As with all drugs, the treatment first had to be tested in lab animals. </p>
<p><a href="https://pubmed.ncbi.nlm.nih.gov/33247091/">In 2020</a> researchers at Temple University in the US successfully used Crispr to seek out HIV in the organs of mice and rats and remove critical bits of HIV DNA. This boosted further research in the field. </p>
<p>In the same year, the same team <a href="https://www.nature.com/articles/s41467-020-19821-7">provided proof</a> that the technique worked in macaques with the simian (monkey) form of HIV, known as SIV. This suggested that the treatment might be safe to test in humans.</p>
<p>While the safety results of EBT-101 are encouraging, there is still a lot of work to do. Testing on larger groups of people and making the therapy affordable for everyone with HIV are crucial because the disease is more prevalent in poorer countries. </p>
<p>Still, the accomplishment of Excision BioTherapeutics is starting to give hope that a cure for Aids may be on the horizon.</p><img src="https://counter.theconversation.com/content/216876/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kalpana Surendranath does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Science is getting closer to finding a cure for HIV.Kalpana Surendranath, Senior Lecturer in Molecular biology and Microbiology, Leader of Genome Engineering Lab, University of WestminsterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2137262023-10-02T12:38:37Z2023-10-02T12:38:37ZHIV self-test kits are meant to empower those at risk − but they don’t necessarily lead to starting HIV treatment or prevention<figure><img src="https://images.theconversation.com/files/550089/original/file-20230925-29-kvx1ps.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3058%2C2000&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Regular testing for HIV protects you and those around you.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/focus-on-an-hiv-self-test-with-seronegative-result-royalty-free-image/930075664">pixinoo/iStock via Getty Images Plus</a></span></figcaption></figure><p>HIV self-test kits were developed to make it easier for people to access HIV testing. However, <a href="https://scholar.google.com/citations?user=7RB_bZUAAAAJ&hl=en">our</a> <a href="https://scholar.google.nl/citations?user=weevnFsAAAAJ&hl=en">research</a> <a href="https://www.researchgate.net/profile/Oluwaseun-Badru">team</a> has found that many people who use self-test kits <a href="https://doi.org/10.1007/s10461-023-04162-5">do not go on to receive needed HIV treatment</a> or start preexposure prophylaxis, or PrEP, to prevent future infection.</p>
<p>In 2016, the World Health Organization <a href="https://www.who.int/publications/i/item/WHO-CDS-HIV-19.36">recommended HIV self-test kits</a> as a way for people to confidentially test for HIV in their homes or other private places. Each kit contains detailed instructions on how to administer the test and read the results without the help of a clinician. However, the instructions advise confirming results in a health facility to improve access to care, especially for those with a positive reading.</p>
<p>Our team conducted a systematic review and meta-analysis of published research and data to understand how HIV self-testing influences access to HIV care and sexual behavior. Specifically, we looked at whether a positive test result led someone to seek care in a hospital or health facility to start treatment and whether a negative test result led someone at risk of contracting HIV to take preventive measures. We also looked at whether test results affected the number of sexual partners, engagement in anal sex without a condom and frequency of condom use.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/D_IHm3p8RW0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">HIV self-test kits provide quick results.</span></figcaption>
</figure>
<p>Based on the 15 studies that met our criteria, we found that while HIV self-testing increased a person’s chances of finding an HIV clinic or doctor by 8%, many people <a href="https://doi.org/10.1007/s10461-023-04162-5">did not initiate HIV treatment or PrEP</a> following self-testing.</p>
<p><a href="https://doi.org/10.1007/s10461-023-04162-5">Female sex workers</a> who used HIV self-test kits were 47% more likely to seek medical care, but this did not reduce the number of clients they saw per night.</p>
<p>For <a href="https://doi.org/10.1007/s10461-023-04162-5">men who have sex with men</a>, using HIV self-test kits may have increased the amount of condomless anal sex they have, according to <a href="https://doi.org/10.1097/QAI.0000000000001709">one U.S. study</a>. Those who use HIV self-test kits were more likely to have condomless anal sex with HIV-positive and HIV-negative partners, as reported by <a href="https://doi.org/10.1007/s10461-022-03804-4">one Chinese study</a>.</p>
<h2>Why it matters</h2>
<p>Many people are living with HIV and receiving treatment. However, some HIV-positive people are unaware of their HIV status and are at risk of infecting other people. Routinely checking your HIV status is important to prevent the spread of HIV.</p>
<p>Unfortunately, HIV testing is low in many regions of the world. Researchers from <a href="https://doi.org/10.4102/sajhivmed.v22i1.1273">South Africa</a>, the <a href="https://doi.org/10.1136/bmjopen-2015-009480">Netherlands</a> and the <a href="https://doi.org/10.1080/09540121.2020.1766663">United States</a> have reported a lack of HIV testing among different parts of the population, including <a href="https://theconversation.com/men-who-have-sex-with-men-originated-during-the-hiv-pandemic-to-focus-on-behavior-rather-than-identity-but-not-everyone-thinks-the-term-helps-189619">men who have sex with men</a>. There are many barriers to HIV testing, including <a href="https://doi.org/10.1186/s12905-021-01590-0">lack of knowledge about HIV</a> and <a href="https://doi.org/10.1080/09540121.2020.1742867">fear of</a> <a href="https://theconversation.com/people-living-with-hiv-face-harmful-stigma-daily-dababys-rant-was-just-more-public-than-most-165443">stigma and discrimination</a>. </p>
<p>Despite the availability of HIV test kits, many people at heightened risk have never been tested for HIV. As our research shows, some of those who test positive don’t receive treatment. Nor do all those who test negative but are at risk of infection receive preventive treatment or change their sexual behavior.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Clinician handing patient condoms" src="https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/550092/original/file-20230925-29-e1or2l.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Public health officials recommend talking to a doctor about HIV self-test results.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/the-doctor-advised-the-young-man-to-prevent-royalty-free-image/1210961713">Wasan Tita/iStock via Getty Images Plus</a></span>
</figcaption>
</figure>
<h2>What still isn’t known</h2>
<p>We found only one study that looked at how HIV self-testing influences PrEP use among men who have sex with men. </p>
<p>More research is needed to better understand the link between HIV self-testing and HIV prevention.</p>
<h2>What’s next</h2>
<p>Our next step is to understand why people did or did not receive care following HIV self-testing. We plan on interviewing HIV self-test kit users about their experience using the self-test and whether they went on to receive care.</p>
<p>We hope the results of this study will help us build an intervention to increase access to care following an HIV self-test. This will contribute toward the national plan to <a href="https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview/">end the HIV epidemic by 2030</a> in the U.S.</p>
<p><em>The <a href="https://theconversation.com/us/topics/research-brief-83231">Research Brief</a> is a short take on interesting academic work.</em></p><img src="https://counter.theconversation.com/content/213726/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adeagbo Oluwafemi Atanda receives funding from University of Iowa and National Institutes of Health. </span></em></p><p class="fine-print"><em><span>Engelbert Bain Luchuo and Oluwaseun Abdulganiyu Badru do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Many people at heightened risk for HIV have never been tested. Those who have self-tested for HIV often don’t go on to receive care or change their sexual behavior.Oluwafemi Atanda Adeagbo, Assistant Professor of Public Health, University of IowaEngelbert Bain Luchuo, Senior Research Associate, University of JohannesburgOluwaseun Abdulganiyu Badru, Ph.D. Candidate in Community and Behavioral Health, University of IowaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2121772023-09-08T12:25:59Z2023-09-08T12:25:59ZAnemia afflicts nearly 1 in 4 people worldwide, but there are practical strategies for reducing it<figure><img src="https://images.theconversation.com/files/546721/original/file-20230906-33614-a4o8yh.jpg?ixlib=rb-1.1.0&rect=15%2C7%2C5126%2C3484&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Anemia symptoms include shortness of breath, dizziness and fatigue.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/doctor-holding-blood-in-test-tube-royalty-free-image/1180192054?phrase=anemia&adppopup=true">Peter Dazeley/The Image Bank via Getty Images</a></span></figcaption></figure><p>Anemia is a major health problem, with <a href="https://doi.org/10.1016/S2352-3026(23)00160-6">nearly 2 billion people</a> affected globally. It afflicts more people worldwide than low back pain or diabetes – or even anxiety and depression combined. </p>
<p>Despite this, investments in reducing anemia have failed to substantially reduce the massive burden of anemia globally over the last few decades.</p>
<p>People <a href="https://www.ncbi.nlm.nih.gov/books/NBK499994/">become anemic</a> when their blood lacks enough healthy red blood cells to carry oxygen throughout the body. This decreased oxygen delivery causes many of the most <a href="https://www.nhlbi.nih.gov/health/anemia/symptoms">common symptoms of anemia</a>, including fatigue, shortness of breath, lightheadedness, difficulty concentrating and challenges with work and daily life tasks. </p>
<p>In addition to its direct health effects, anemia can <a href="https://doi.org/10.1111/nyas.14105">inhibit brain development and fine motor skills</a> in children and heighten the <a href="https://doi.org/10.3390/jcm10122556">risk of stroke</a>, <a href="https://doi.org/10.1681/ASN.2005030226">cardiovascular disease</a>, <a href="https://doi.org/10.1212/WNL.0000000000008003">dementia</a> and other chronic illnesses in older adults. <a href="https://doi.org/10.1111/nyas.14093">Anemia during pregnancy</a> can lead to increased rates of anxiety and depression, early labor, postpartum hemorrhage, stillbirth and low birth weight. Infections for both mother and baby are also more likely when the mother is anemic.</p>
<p>We are <a href="https://scholar.google.com/citations?user=LbtdQcsAAAAJ&hl=en">global</a> <a href="https://scholar.google.com/citations?user=0kfiPK8AAAAJ&hl=en">health</a> <a href="https://www.healthdata.org/about/people/nicholas-kassebaum">researchers</a> with expertise in epidemiological modeling of anemia alongside other maternal, neonatal and nutritional disorders. </p>
<p>Our work is part of the <a href="https://www.healthdata.org/research-analysis/gbd">Global Burden of Disease Study</a>, a large research study comprehensively estimating health loss due to hundreds of diseases, injuries and risk factors around the globe. Through our analysis, we have produced annual estimates of anemia prevalence by underlying cause for 204 countries and territories, by age and sex, from 1990 to the present. We have collected thousands of data points across hundreds of sources to produce the most comprehensive picture of anemia burden.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/z0Z1QMouVgE?wmode=transparent&start=29" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Anemia is often measured by the amount of hemoglobin – an oxygen-carrying protein within red blood cells – that a person has in their blood.</span></figcaption>
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<h2>Anemia is a widespread problem</h2>
<p>Anemia is diagnosed by a simple blood test and can be caused by a number of underlying conditions. </p>
<p>Decreases in healthy red blood cells can occur due to excessive loss of existing red blood cells, such as through bleeding or destruction by the body’s immune system. Anemia can also occur due to decreased production of new red blood cells or changes in the normal structure or lifespan of red blood cells that make them less effective.</p>
<p>Globally, anemia is the third-largest cause of disability: Our recent study found that <a href="https://doi.org/10.1016/S2352-3026(23)00160-6">nearly 1 in 4 people has anemia</a>. This burden is concentrated among children younger than 5 years and adolescent girls and women, one-third of whom are anemic. Anemia rates are particularly high in sub-Saharan Africa and South Asia, where we estimated that 40% – or two out of every five people – have anemia.</p>
<p>Reductions in anemia rates have been slow and uneven, dropping from 28% to 24% globally from 1990 to 2021. Adult males have fared better, with young children and adolescent girls and women – who bear the highest burden of anemia – showing the least progress. On the positive side, there has been a shift toward milder forms of anemia, which result in much less disability compared to severe anemia.</p>
<h2>Reducing anemia means tackling underlying causes</h2>
<p>Substantially reducing anemia globally is complicated by its many underlying causes. Dietary iron deficiency is the <a href="https://doi.org/10.1016/S0140-6736(15)60865-0">most common cause</a> across the globe. But other important drivers of anemia include blood disorders such as <a href="https://www.cdc.gov/ncbddd/sicklecell/index.html#">sickle cell disease</a> or <a href="https://www.cdc.gov/ncbddd/thalassemia/facts.html">thalassemias</a>, infectious diseases like <a href="https://theconversation.com/locally-transmitted-malaria-in-the-us-could-be-a-harbinger-of-rising-disease-risk-in-a-warming-climate-5-questions-answered-208726">malaria</a> and <a href="https://theconversation.com/parasitic-infections-hit-the-health-of-low-income-black-communities-where-states-have-neglected-sewage-systems-205616">hookworm</a>, gynecologic and obstetric conditions, <a href="https://theconversation.com/what-is-inflammation-two-immunologists-explain-how-the-body-responds-to-everything-from-stings-to-vaccination-and-why-it-sometimes-goes-wrong-193503">inflammation</a> and chronic diseases. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Three-dimensional illustration of human artery anatomy, showing normal red blood cells and sickle-shaped blood cells flowing away from the heart." src="https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=381&fit=crop&dpr=1 600w, https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=381&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=381&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=478&fit=crop&dpr=1 754w, https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=478&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/547067/original/file-20230907-9809-nfpk9n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=478&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Sickle cell disease – characterized by crescent or sickle-shaped red blood cells that can block blood flow to the rest of the body – is a well-recognized cause of anemia.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/sickle-cell-cardiovascular-royalty-free-image/1130415446?phrase=sickle+cell+disease&adppopup=true">wildpixel/iStock via Getty Images</a></span>
</figcaption>
</figure>
<p>Anemia in adolescent and adult women often occurs due to loss of blood from menstruation and increased needs for blood for the developing baby during pregnancy. Much of the anemia burden in this group is <a href="https://doi.org/10.3390/nu13082745">likely related to</a> <a href="https://theconversation.com/the-us-lacks-adequate-education-around-puberty-and-menstruation-for-young-people-an-expert-on-menstrual-health-explains-187501">lack of menstrual education</a>, inadequate options for effectively managing menstrual problems in those who have them, and unmet needs for family planning services. These are also important drivers among transgender men and nonbinary people who menstruate. </p>
<p>Young children <a href="https://doi.org/10.1016/j.jpeds.2015.07.014">have increased requirements</a> for iron as their bodies grow, and malnutrition is a common cause of anemia in this group globally.</p>
<p>Iron supplementation has historically been the primary form of treatment and prevention of anemia. This includes large-scale addition of iron to foods such as flour, rice or milk, as well as providing oral iron tablets and intravenous iron, depending on the context and severity. </p>
<p>Some research has suggested that less than half of people with anemia will <a href="https://doi.org/10.1111/nyas.14175">fully respond to supplemental iron</a> if the underlying causes of iron deficiency remain untreated. For example, cells in our bodies <a href="https://doi.org/10.1016/j.beha.2004.08.020">sequester iron</a> as part of the immune response to some infections. Supplementing with iron without treating the underlying infection will do little to solve the iron deficiency in the long run, and it <a href="https://doi.org/10.1016/S0140-6736(06)67962-2">may even be harmful</a>.</p>
<p>Additional interventions include <a href="https://www.cdc.gov/hiv/risk/art/index.html">HIV treatment and prevention</a>, with <a href="https://theconversation.com/long-acting-injectable-prep-is-a-big-step-forward-in-hiv-prevention-190225">pre-exposure prophylaxis</a> and <a href="https://www.cdc.gov/hiv/basics/livingwithhiv/treatment.html">anti-retroviral therapy</a>. Preventing initial infection with HIV or suppressing the effects of the virus once infected will reduce the anemia burden related to HIV/AIDS.</p>
<p>Other strategies include malaria control methods, such as insecticide-treated bed nets and vaccination, and monitoring and prevention of chronic illnesses such as <a href="https://www.cdc.gov/kidneydisease/basics.html#">chronic kidney disease</a> and <a href="https://www.niehs.nih.gov/health/topics/conditions/inflammation/index.cfm">inflammatory conditions</a>. In combination with a robust supplementation program, these interventions could meaningfully reduce the global burden of anemia.</p>
<p>Anemia makes it hard for nearly 2 billion people worldwide to learn in school, perform at work and take care of their families. We hope our findings will allow for more comprehensive intervention and treatment plans, especially for the most vulnerable – adolescent and adult women, children and the elderly.</p><img src="https://counter.theconversation.com/content/212177/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nicholas Kassebaum receives funding from the Bill & Melinda Gates Foundation. </span></em></p><p class="fine-print"><em><span>Theresa A McHugh and William Gardner do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Among young children, adolescents and adult women, anemia strikes 1 in 3 globally. Most cases are driven by dietary iron deficiency, red blood cell disorders and untreated tropical diseases.William Gardner, Researcher in Neonatal and Child Health at the Institute for Health Metrics and Evaluation, University of WashingtonNicholas Kassebaum, Adjunct Professor in Health Metrics Sciences and Professor of Anesthesiology and Pain Medicine, University of WashingtonTheresa A McHugh, Researcher and Scientific Writer at the Institute for Health Metrics and Evaluation, University of WashingtonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2087122023-07-05T13:27:06Z2023-07-05T13:27:06ZBusinesses that address social or environmental problems often struggle to survive: 3 things that can help them<figure><img src="https://images.theconversation.com/files/535287/original/file-20230703-255984-ejs0dn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Social entrepreneurs play an important role in alleviating poverty. </span> <span class="attribution"><span class="source">Per-Anders Pettersson/Getty Images</span></span></figcaption></figure><p>Social enterprises are organisations that promote social or environmental issues as their core business. They are useful to societies in lots of ways. They can help solve social and economic problems such as poverty and joblessness, among others. They can also help support the work of local, provincial and national government. </p>
<p>Over the last decade a <a href="https://www.socialchangecentral.com/social-enterprise-statistics-from-around-the-world/">growing number of these enterprises</a> have been started in many countries. South Africa has also seen an increase in social enterprises.</p>
<p>But running a social enterprise <a href="https://www.weforum.org/agenda/2015/06/the-challenges-of-being-a-social-enterprise/">isn’t easy</a>. They need to pursue a social motive while also trying to remain sustainable with little funding.</p>
<p>This often means that they need structures, processes and leadership acumen for both their operational success and sustainability.</p>
<h2>Challenges faced by social enterprises</h2>
<p>The performance and operation of social enterprises can be affected by <a href="https://www.bbrief.co.za/content/uploads/2019/03/Gibbs-Social-Enterprises-in-South-Africa-Report.pdf">a lack of resources</a>. Their failure rate is therefore <a href="https://www.weforum.org/agenda/2017/06/3-reasons-why-social-enterprises-fail-and-what-we-can-learn-from-them/#:%7E:text=Most%20of%20them%20%2878.3%25%29%20were%20never%20supported%20by,lasted%20more%20than%2010%20years%20as%20a%20company">quite high</a>.</p>
<p>So what could help them?</p>
<p>We conducted <a href="https://www.tandfonline.com/doi/abs/10.1080/19420676.2023.2212672">a study</a> to try to answer this question. Our focus was on what capabilities needed to be in place for social enterprises to operate effectively. </p>
<p>Our research shows that for social enterprises to enhance their performance, network capability and strategic planning are key. Addressing these challenges can help their owners and managers respond to the challenges such enterprises face. At the core of this is addressing the challenge of funding and sustainability. Social enterprises rely mostly on donor funding. </p>
<h2>Experiences on the ground</h2>
<p>We conducted our study in the Eastern Cape province of South Africa. It’s one of the poorest regions in the country, with a high unemployment rate and continued social dependence. Industries on which the area’s economy depends are <a href="https://ecsecc.org/newsitem/eastern-cape-economy-declined-by-13-in-2022q4">in decline</a>.</p>
<p>Our research focused on 147 social enterprises in the area. One set of enterprises focused on poverty alleviation efforts. They ran empowerment projects for local communities, especially those in the black residential areas.</p>
<p>The social enterprises in the second group in our sample were dedicated to improving livelihoods of communities through agricultural support mechanisms.</p>
<p>Finally, a third group focused on assisting communities to respond to health challenges such as HIV/AIDS, the COVID-19 pandemic and tuberculosis.</p>
<p>Some of the questions we asked in our survey were about how each social enterprise made strategic decisions; the relationship between the social enterprise and its networks; and the enterprise’s continued value creation amid challenges. We then ran a model to see how these three issues related to performance.</p>
<p>The results showed that three important capabilities were needed to enhance social enterprise performance. </p>
<p>The first was strategic planning. This involves defining the enterprise’s direction in the short and long term, what it seeks to achieve in terms of goals and tactics, and how the enterprise will achieve all this. </p>
<p>Social enterprises need to be deliberate and intentional in setting up strategic planning regimes. They need a clear horizon, targets and mandates. These should then drive their day to day operation.</p>
<p>The second need was for strong networks. Building networks involves continued interaction between the social enterprise and its stakeholders. Networking capabilities allow the social enterprise to remain relevant to other important role players in the community.</p>
<p>Finally, our research points to the need for the social enterprise to keep a focus on its main business, the social aspect <a href="https://www.emerald.com/insight/content/doi/10.1108/SEJ-08-2021-0062/full/html">mandate of value co-creation</a>. This continued quest for the social aspect necessitates continued involvement and relevance of the social enterprise to the community. Our finding on value co-creation – the social enterprise partnering with other stakeholders and community members to achieve its social goal – becomes important here. </p>
<h2>Recommendations</h2>
<p>We recommend that social enterprises be proactive in improving their internal processes and structures. This can be achieved through ongoing efforts to make improvements from the bottom up – meaning that the employees also drive the changes, not just the management. By being deliberate and intentional in their efforts, social enterprises can improve their operations and achieve better results.</p>
<p>We also recommend that financial and non-financial resources such as tangible assets (land, buildings, motor vehicles and equipment) and intangible assets (patents, goodwill and intellectual property) should be channelled to support strategic planning, networking capabilities and value co-creation. This means they should continue to be deliberate in searching for funding to be able to support their core activities. </p>
<p>Concerning non-financial resources, this includes investing in the training of the people running the social enterprise. Such non-financial investment strengthens the social enterprise through internal development of the three capabilities found in our research: emphasis on strategic planning, the building of strong networks and continued quest to create value together by all stakeholders. </p>
<p>The enterprise also needs clear channels for sharing essential information with stakeholders, including communities, towards achieving the social goal of the enterprise. </p>
<p>Formal networking structures should be established to enable the social enterprise to build, maintain and renew strong relationships with stakeholders.</p><img src="https://counter.theconversation.com/content/208712/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Willie Tafadzwa Chinyamurindi receives funding from the National Heritage Council and the National Research Foundation. </span></em></p><p class="fine-print"><em><span>Progress Hove-Sibanda receives funding from the NMB Business Chamber</span></em></p><p class="fine-print"><em><span>Motshedisi Mathibe does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Social enterprises need to be proactive in improving their internal processes and structures. They also need to share essential information.Willie Tafadzwa Chinyamurindi, Professor, University of Fort HareMotshedisi Mathibe, Senior Lecturer Gordon Institute of Business Science, University of PretoriaProgress Hove-Sibanda, Associate professor of logistics, Nelson Mandela UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2055442023-05-16T12:41:13Z2023-05-16T12:41:13ZGay men can now donate blood after FDA changes decades-old rule – a health policy researcher explains the benefits<figure><img src="https://images.theconversation.com/files/525731/original/file-20230511-941-a7vrz0.jpg?ixlib=rb-1.1.0&rect=0%2C20%2C6709%2C4446&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Allowing gay and bisexual men to donate blood would help alleviate chronic blood supply shortages in the U.S.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/donating-blood-royalty-free-image/1093904562?phrase=blood+donation&adppopup=true">Petri Oeschger/Moment via Getty Images</a></span></figcaption></figure><p><em>The U.S. Food and Drug Administration announced on May 11, 2023, that it has officially <a href="https://www.npr.org/2023/05/11/1175622785/fda-blood-donations-gay-bisexual-men">dropped restrictions that prohibit gay and bisexual men</a> from donating blood under many circumstances on May 11, 2023. The ban was <a href="https://doi.org/10.1111/1468-0009.12114">initially put in place</a> in the early days of the AIDS epidemic, but for years medical professionals and gay rights advocates have argued that the ban was no longer medically justifiable and that it unnecessarily discriminated against <a href="https://theconversation.com/men-who-have-sex-with-men-originated-during-the-hiv-pandemic-to-focus-on-behavior-rather-than-identity-but-not-everyone-thinks-the-term-helps-189619">men who have sex with men</a>.</em></p>
<p><em><a href="https://luskin.ucla.edu/person/ayako-miyashita-ochoa">Ayako Miyashita</a> is a health policy researcher at the University of California, Los Angeles, who studies HIV treatment and prevention. She explains the history of the ban and the reasoning behind its long-awaited reversal.</em></p>
<h2>1. When and why did the ban begin?</h2>
<p>When the FDA <a href="https://doi.org/10.1111/1468-0009.12114">first implemented the blood donation ban</a> in 1983 for men who have sex with men, there were good reasons for broad regulations to ensure the safety of the blood supply. At the start of the AIDS epidemic, public health officials were dealing with an unknown virus that was spread through unknown means. Researchers <a href="https://doi.org/10.1126/science.6200936">formally identified HIV as the cause of AIDS</a> a year later, in 1984, and it took another year to approve the first test to screen blood donations for HIV in 1985.</p>
<p>Despite the ban on blood donations from men who have sex with men, there was some small risk that failures in <a href="https://doi.org/10.1111/trf.14195">donor screening</a> and <a href="https://www.federalregister.gov/documents/2011/07/19/2011-18093/quarantine-release-errors-in-blood-establishments-public-workshop">blood screening protocols</a> could lead to transmission of HIV or other diseases from blood transfusion. But over the years, scientific advancements and strict protocols have helped to nearly <a href="https://doi.org/10.1111/trf.12423">eliminate HIV transmission</a> through blood. In fact, the last documented transmission of HIV through the a U.S. donor’s blood product <a href="https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5941a3.htm">occurred nearly 15 years ago</a>.</p>
<p>Starting in 2013, the U.S. government began implementing a nationwide <a href="https://doi.org/10.1111/trf.13632">system to monitor</a> the safety of the U.S. blood supply for a variety of different pathogens, including HIV. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A bag of donated blood." src="https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/526324/original/file-20230515-31713-uevzio.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Modern tests and screening protocols prevent blood of people with HIV or other diseases from getting into the U.S. blood supply.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/phlebotomist-adel-velasco-prepares-a-blood-donation-at-a-news-photo/1308846819?adppopup=true">MediaNews Group/Los Angeles Daily News via Getty Images</a></span>
</figcaption>
</figure>
<h2>2. Why lift the ban now?</h2>
<p>While the blood donation ban – as well as many other <a href="https://www.cdc.gov/hiv/policies/law/states/exposure.html">laws passed in the 1980s regarding HIV exposure and spread</a> – were reasonable at the time, the science has changed. Researchers and public health officials have gained a better understanding of how HIV is transmitted and the risks associated with different activities. Given today’s knowledge, many <a href="https://www.ama-assn.org/about/leadership/fda-must-lift-its-discriminatory-blood-donor-policy">medical experts believe</a> that the benefits of the ban no longer outweigh the hit to the blood supply or the harm caused by what is a discriminatory rule. </p>
<p>The FDA has been slowly working toward this change. In December 2015, the organization took a big step by allowing men who have sex with men to donate blood if they hadn’t had <a href="https://www.federalregister.gov/documents/2020/06/17/2020-13051/revised-recommendations-for-reducing-the-risk-of-human-immunodeficiency-virus-transmission-by-blood">sexual contact in one year</a>. That period was <a href="https://www.govinfo.gov/content/pkg/FR-2020-06-17/pdf/2020-13051.pdf">further reduced to three months</a> in April 2020, during the height of the COVID-19 pandemic, to help fight a <a href="https://www.redcross.org/about-us/news-and-events/press-release/2020/american-red-cross-faces-severe-blood-shortage-as-coronavirus-outbreak-threatens-availability-of-nations-supply.html">critical blood shortage</a>. </p>
<p>While a step in the right direction, these updates didn’t change the blunt assessment by the FDA that men who have sex with men are performing high-risk sexual behaviors and are themselves high-risk donors. Researchers and gay rights advocates have long argued that <a href="https://doi.org/10.1056/NEJMp2112329">time-based deferrals lack nuance</a> and fail to realistically consider the differences in risk associated with the type of sex, type of relationship, number of partners and frequency of sexual encounters.</p>
<p>The FDA’s latest <a href="https://www.fda.gov/regulatory-information/search-fda-guidance-documents/recommendations-evaluating-donor-eligibility-using-individual-risk-based-questions-reduce-risk-human">draft recommendations</a> go a long way toward improving clarity about what makes a person a high-risk donor and removes the blanket categorization of prospective donors based on their gender and sexual orientation alone.</p>
<p>Under the new guidelines, there is a way to differentiate between individuals who are monogamous and those who are not, as well as between those who have not engaged in anal sex in the prior three months and those who have. The recommendation now suggests that blood donor history questionnaires be used to evaluate an individual’s risk rather than a reliance on broad categorizations. If the assessment finds an individual to be high-risk, then the guidelines recommend that person be prevented from donating blood for three months.</p>
<h2>3. What effect could this have on the blood supply?</h2>
<p>The FDA’s latest move represents a seismic shift for men who have sex with men as well as for the <a href="https://theconversation.com/heading-into-the-third-year-of-the-pandemic-the-us-blood-supply-is-at-a-10-year-low-175906">critically low U.S. blood supply</a>. </p>
<p>According to recent research, a conservative estimate suggests that the lifting of the ban will lead to a <a href="https://williamsinstitute.law.ucla.edu/publications/blood-donation-ban-msm/">2% to 4% increase in the blood supply</a>. With the ongoing blood shortage, that increase could help save more than a million lives. In addition, removing gender and sexual orientation from the risk assessment for blood donation will take the U.S. one step further in addressing stigma and discrimination against men who have sex with men.</p><img src="https://counter.theconversation.com/content/205544/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ayako Miyashita does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>In 1983, during the early days of the AIDS epidemic, the US Food and Drug Administration made the decision to ban gay men from donating blood. Now, 40 years later, it is dropping that rule.Ayako Miyashita, Adjunct Professor of Public Policy and Social Welfare, University of California, Los AngelesLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2042632023-04-26T12:28:46Z2023-04-26T12:28:46ZChallenging the FDA’s authority isn’t new – the agency’s history shows what’s at stake when drug regulation is in limbo<figure><img src="https://images.theconversation.com/files/522817/original/file-20230425-28-sxmbmf.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2048%2C1370&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">In addition to evaluating new drug applications, the FDA also inspects drug manufacturing facilities.</span> <span class="attribution"><a class="source" href="https://flic.kr/p/bCZpCD">The U.S. Food and Drug Administration/Flickr</a></span></figcaption></figure><p>Political pressure is nothing new for the U.S. Food and Drug Administration. The agency has <a href="https://theconversation.com/the-fdas-big-gamble-on-the-new-alzheimers-drug-162396">frequently come under fire</a> for its drug approval decisions, but attacks on its decision-making process and science itself have increased <a href="https://www.statnews.com/2020/08/27/trump-has-launched-an-all-out-attack-on-the-fda-will-its-scientific-integrity-survive/">during the COVID-19 pandemic</a>.</p>
<p>Recent challenges to the FDA’s authority have emerged in the context of reproductive rights.</p>
<p>On Nov. 18, 2022, a group of anti-abortion doctors and medical groups <a href="https://adflegal.org/sites/default/files/2022-11/Alliance-for-Hippocratic-Medicine-v-FDA-2022-11-18-Complaint.pdf">filed a lawsuit</a> against the FDA, challenging its approval from more than 20 years ago of <a href="https://theconversation.com/mifepristone-is-under-scrutiny-in-the-courts-but-it-has-been-used-safely-and-effectively-around-the-world-for-decades-204163">mifepristone</a>, a drug taken in combination with another medication, misoprostol, to <a href="https://theconversation.com/how-will-the-supreme-courts-decision-on-mifepristone-affect-abortion-access-4-questions-answered-204172">treat miscarriages</a> and used to induce <a href="https://www.guttmacher.org/article/2022/02/medication-abortion-now-accounts-more-half-all-us-abortions">more than 50% of abortions</a> in early-stage pregnancies in the U.S.</p>
<p>It is widely believed that the plaintiffs filed the lawsuit in the Northern District of Texas so District Judge Matthew J. Kacsmaryk, a <a href="https://www.nytimes.com/2023/04/07/us/politics/texas-judge-matthew-kacsmaryk-abortion-pill.html">well-known abortion opponent</a>, could oversee the litigation. While Kacsmaryk did issue a preliminary injunction ruling that the FDA lacked the authority to approve mifepristone, an appeal <a href="https://storage.courtlistener.com/recap/gov.uscourts.ca5.213145/gov.uscourts.ca5.213145.183.2_1.pdf">partially reversed</a> the decision and the Supreme Court <a href="https://www.supremecourt.gov/opinions/22pdf/22a901_3d9g.pdf">stayed Kacsmaryk’s order</a>. The case now sits at the 5th U.S. Circuit Court of Appeals and will likely return to the Supreme Court.</p>
<p>The FDA is the government’s oldest consumer protection agency. The effects of this lawsuit could reach far beyond mifepristone – undermining the agency’s authority could threaten its entire drug approval process and change access to commonly used drugs, ranging from amoxycillin and Ambien to prednisone and Paxlovid.</p>
<p>I am a <a href="https://scholar.google.com/citations?user=Yeg0EUgAAAAJ&hl=en">legal scholar</a> whose research focuses in part on the law and ethics of the FDA’s drug approval process. Examining the FDA’s history reveals the unprecedented nature of the current challenges to the agency’s authority.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Chart titled 'Data for Decisions' depicting sources the FDA considers in its decision-making" src="https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=381&fit=crop&dpr=1 600w, https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=381&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=381&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=479&fit=crop&dpr=1 754w, https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=479&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/522844/original/file-20230425-14-2hs75n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=479&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Then FDA Commissioner George Larrick used this chart during 1964 Senate testimony to illustrate the range of sources the agency uses in evaluating proposals.</span>
<span class="attribution"><a class="source" href="https://flic.kr/p/dv6CFV">The U.S. Food and Drug Administration/Flickr</a></span>
</figcaption>
</figure>
<h2>Events shaping FDA’s focus on safety</h2>
<p>In its early years, the FDA focused primarily on balancing the competing goals of consumer safety with access to experimental treatments. The priority was strengthening consumer protection to prevent tragedy from recurring. </p>
<p>For instance, at the turn of the 20th century, Congress passed the <a href="https://ncjolt.org/articles/volume-23/volume-23-issue-4/fdas-accelerated-approval-emergency-use-authorization-and-pre-approval-access-considerations-for-use-in-public-health-emergencies-and-beyond/">Biologics Control Act of 1902</a>, providing the federal government the authority to regulate vaccines. This law was introduced after 13 children died from inadvertently contaminated diphtheria antitoxin, which was made from the blood of a horse infected with tetanus. </p>
<p>A few years later, after investigative journalists publicized the unsanitary conditions and food-handling practices in meatpacking plants, Congress passed the <a href="https://ssrn.com/abstract=3237889">Pure Food and Drug Act of 1906</a>, which prohibited the marketing and sale of misbranded and contaminated foods, drinks and drugs.</p>
<p>Similarly, in 1937, approximately 71 adults and 34 children died from ingesting <a href="https://doi.org/10.7326/0003-4819-122-6-199503150-00009">S.E. Massengill’s antibacterial elixir</a>, which contained a poisonous raspberry flavoring added to sweeten the taste. In response, Congress passed the <a href="https://www.fda.gov/about-fda/fda-history/milestones-us-food-and-drug-law">Federal Food, Drug and Cosmetic Act of 1938</a>, requiring manufacturers to show that drugs are safe before they go on the market. This act marked the beginning of modern drug regulations and the birth of the FDA as a regulatory agency. </p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/4wIBCoxuOJ0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">FDA scientist Frances Oldham Kelsey’s decision to not approve thalidomide for use in the U.S. protected Americans from the birth defects that swept newborns in other countries.</span></figcaption>
</figure>
<p>Then, in 1962, Dr. Frances Oldham Kelsey, a pharmacologist, physician and medical officer working at the FDA, <a href="https://www.fda.gov/about-fda/fda-history/milestones-us-food-and-drug-law">refused to approve thalidomide</a>, a drug marketed in Europe, Canada, Japan and other countries to alleviate morning sickness in pregnant women but later found to cause severe birth defects. Shocking revelations of children born without limbs or suffering from other debilitating conditions motivated Congress to pass the <a href="https://theconversation.com/could-thalidomide-happen-again-46813">Kefauver-Harris Drug Amendments of 1962</a>, which ushered in a more cautious approach to the drug approval process.</p>
<h2>FDA’s turn toward expanding access</h2>
<p>During the 1970s, questions about the limits of safety versus an individual’s right to access arose when cancer patients who wanted access to an unapproved drug derived from apricots, Laetrile, sued the FDA. The agency had blocked the drug’s shipment and sale because it was not approved for use in the U.S. At that time, the Supreme Court <a href="https://tile.loc.gov/storage-services/service/ll/usrep/usrep442/usrep442544/usrep442544.pdf">upheld the FDA’s protective authority</a>, holding that an unproven therapy is unsafe for all patients, including the terminally ill.</p>
<p>The 1980s, however, marks the FDA’s shift toward increasing access following reports of an emerging disease – AIDS – which primarily affected gay men. In the first nine years of the AIDS epidemic, <a href="https://www.cdc.gov/mmwr/preview/mmwrhtml/00001880.htm">over 100,000 Americans died</a>. AIDS patients and their advocates became <a href="https://dx.doi.org/10.2139/ssrn.2739121">vocal critics of the FDA</a>, arguing that the agency was too paternalistic and restrictive following events like the thalidomide scare.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="ACT UP protestors lying on the ground with tombstone-shaped signs demanding the FDA allow access to experimental HIV/AIDS drugs" src="https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=412&fit=crop&dpr=1 600w, https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=412&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=412&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=518&fit=crop&dpr=1 754w, https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=518&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/522846/original/file-20230425-3279-zhlvri.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=518&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Protests from HIV/AIDS activists like ACT UP spurred the FDA to develop expedited drug approval tracks to meet urgent public health needs.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/protesters-close-the-federal-drug-administration-building-news-photo/1213566352">Mikki Ansin/Peter Ansin via Getty Images</a></span>
</figcaption>
</figure>
<p>After massive protests, Dr. Anthony Fauci, then director of the National Institute of Allergy and Infectious Diseases, proposed a <a href="https://www.washingtonpost.com/outlook/2020/04/29/fight-against-aids-has-shaped-how-potential-covid-19-drugs-will-reach-patients/">parallel track program</a> allowing eligible patients access to unapproved experimental treatments. This, along with other existing FDA mechanisms, helped lay the path for other alternative approval pathways, such as <a href="https://theconversation.com/what-are-emergency-use-authorizations-and-do-they-guarantee-that-a-vaccine-or-drug-is-safe-151178">Emergency Use Authorization</a>, which played a large role in permitting use of vaccines and medications pending full FDA approval during the COVID-19 pandemic.</p>
<h2>Future of the FDA</h2>
<p>Despite the FDA’s shift toward increased access, the <a href="https://www.statnews.com/2018/05/31/right-to-try-ron-johnson/">political right has in recent years argued</a> that the agency remains too bureaucratic and paternalistic and should be deregulated – an argument seemingly contrary to the reasoning underlying Kacsmaryk’s recent order that the FDA did not sufficiently evaluate the safety of mifepristone in its approval.</p>
<p>Mifepristone, which has <a href="https://www.ama-assn.org/delivering-care/public-health/ama-court-don-t-overturn-fda-approval-mifepristone">overwhelming data supporting its safety</a>, could remain available to some people in some states regardless of the outcome of this lawsuit. While the FDA approves drugs for consumer use, it does not regulate the general practice of medicine. Doctors can <a href="https://www.fda.gov/patients/learn-about-expanded-access-and-other-treatment-options/understanding-unapproved-use-approved-drugs-label">prescribe FDA-approved drugs off-label</a>, meaning they could prescribe a drug with a different dose, in a different way or for a different use than what the FDA has approved it for.</p>
<p>The mifepristone case has broad implications for the FDA’s future and could have devastating effects on health in the U.S. Due in part to FDA involvement, public health interventions have led to a <a href="https://www.cdc.gov/mmwr/preview/mmwrhtml/mm6019a5.htm#">62% increase in life expectancy</a> in the 20th century. These include vaccines and medications for childhood illnesses and infectious diseases such as HIV, increased regulation of tobacco, and <a href="https://theconversation.com/fda-approval-of-over-the-counter-narcan-is-an-important-step-in-the-effort-to-combat-the-us-opioid-crisis-198497">over-the-counter Narcan</a> to combat the opioid crisis, among others.</p>
<p>The FDA needs to be able to use its scientific expertise to make data-driven decisions that balance safety and access, without the ability of a single judge to potentially gut the system. The agency’s history is an important reminder of the need for strong administrative agencies and ongoing vigilance to protect everyone’s health.</p><img src="https://counter.theconversation.com/content/204263/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Christine Coughlin is affiliated with the Foundation for Prosecutorial Accountability.</span></em></p>As the government’s oldest consumer protection agency, the FDA has long butted up against drugmakers, activists and politicians. But undermining its work could be harmful to patient health and safety.Christine Coughlin, Professor of Law, Wake Forest UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1949082023-01-24T13:23:01Z2023-01-24T13:23:01ZGrassroots AIDS activists fought for and won affordable HIV treatments around the world – but PEPFAR didn’t change governments and pharma<figure><img src="https://images.theconversation.com/files/505231/original/file-20230118-18-a5un95.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1024%2C645&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">AIDS activists have used protests to demand access to treatment.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/people-from-africa-action-mark-world-aids-day-with-a-rally-news-photo/78178017">Jim Watson/AFP via Getty Images</a></span></figcaption></figure><p>The <a href="https://www.kff.org/global-health-policy/fact-sheet/the-u-s-presidents-emergency-plan-for-aids-relief-pepfar/">President’s Emergency Program for AIDS Relief, or PEPFAR</a>, has revolutionized the fight against global AIDS over the last 20 years. <a href="https://www.state.gov/wp-content/uploads/2021/12/PEPFAR-Latest-Global-Results.pdf">In that time</a>, the U.S. program has brought antiretroviral treatment to nearly 19 million people living with HIV, the virus that causes AIDS; prevented mother-to-child transmission of HIV for 2.8 million babies; and brought HIV testing and prevention services to millions of others. </p>
<p>But this program would not be so successful – and might not even exist – without the work of grassroots AIDS activists around the world.</p>
<p>As a <a href="https://scholar.google.com/citations?user=pTaBXaIAAAAJ&hl=en">historian of social movements</a>, I spent years interviewing AIDS activists, digging through their papers and scanning old websites, group email lists and message boards. These sources showed that, over the course of more than a decade, these activists challenged the status quo to demand – and deliver – HIV treatment to millions of poor people around the world.</p>
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<figcaption><span class="caption">Treatment Action Campaign activists in South Africa put pressure on drugmakers and governments for access to HIV medication.</span></figcaption>
</figure>
<h2>AIDS drugs for Africa</h2>
<p>In his <a href="https://www.washingtonpost.com/wp-srv/onpolitics/transcripts/bushtext_012803.html">2003 State of the Union address</a>, then-U.S. President George W. Bush announced the creation of PEPFAR when he called for an astounding US$15 billion in funding over five years for the fight against AIDS in Africa and the Caribbean.</p>
<p>His announcement did not come out of nowhere. By that point, AIDS activists had spent years fighting to bring treatments for HIV to low- and middle-income countries hardest hit by the epidemic. My book, “<a href="https://uncpress.org/book/9781469661339/to-make-the-wounded-whole">To Make the Wounded Whole</a>,” describes how members of the AIDS Coalition to Unleash Power (ACT UP) Philadelphia linked their own struggles for affordable, quality health care for poor people with AIDS in the U.S. to similar struggles around the world.</p>
<p>This fight began in earnest in the late 1990s when highly effective antiretrovirals to treat HIV became available, giving a new lease on life to those who could access them. But the new drugs were expensive, and activists saw that their high cost would <a href="https://actupny.org/Vancouver/sawyerspeech.html">put them out of reach for most who needed them</a>.</p>
<p>Some low- and middle-income countries took their own steps to make life-saving antiretrovirals available. In 1997, South Africa, in the midst of a rapidly growing HIV epidemic, passed the <a href="https://www.jstor.org/stable/24115724">Medicines and Related Substances Act</a>, allowing the government to produce or acquire less-expensive generic versions of the drugs. Meanwhile, <a href="https://doi.org/10.1016/s0140-6736(02)11775-2">domestically produced generics</a> were a cornerstone of Brazil’s program to provide access to free antiretrovirals for people living with HIV/AIDS in the country.</p>
<p><a href="https://web.archive.org/web/20000524182434/http://www.aegis.com:80/news/ct/1999/ct990404.html">Pharmaceutical companies opposed these efforts</a>, with a representative of the Pharmaceutical Research and Manufacturers Association (PhRMA) claiming that countries that produced generics committed “a form of patent piracy.” So, too, did the Clinton administration, claiming that South Africa and Brazil violated intellectual property agreements under the World Trade Organization. In particular, former Vice President Al Gore, acting as chair of the U.S.-South Africa Binational Commission, and Charlene Barshefsky, the U.S. Trade Representative, <a href="http://www.cptech.org/ip/health/sa/stdept-feb51999.html">pressured their South African counterparts</a> to change the law in 1999.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Activists marching with signs reading 'Europe! Hands off our medicine'" src="https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505233/original/file-20230118-15-abvp33.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">AIDS activists in Nairobi, Kenya, protested against a free trade agreement between the European Union and India that would have phased out generic AIDS drugs.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/KenyaAIDS/a45c66d0b20044878765422e1f099f09">Khalil Senosi/AP Photo</a></span>
</figcaption>
</figure>
<p>Activists fought back against both the pharmaceutical industry and the policymakers who put intellectual property rules, and the corporate profits they protected, ahead of saving people’s lives. Members of ACT UP Philadelphia, along with others, <a href="https://actupny.org/actions/gorezaps.html">hounded Gore on the presidential campaign trail</a>, chanting, “Gore is killing Africans – AIDS drugs now,” and <a href="https://www.democracynow.org/1999/11/19/act_up_activists_storm_office_of">occupied Barshefsky’s office in Washington</a>. They also participated in a massive demonstration at the 2000 International AIDS Conference in Durban, South Africa, with thousands of marchers from around the world crying “<a href="https://actupny.org/reports/durban-march.html">Phansi, Pfizer, phansi!</a>” (“phansi” is Zulu for “down”) to demand a reduction in the drug company’s AIDS treatment prices.</p>
<p>All of this agitation worked. Clinton <a href="https://www.sfgate.com/health/article/Poor-Nations-Given-Hope-on-AIDS-Drugs-New-2892857.php">curbed his administration’s pressure campaign</a> against South Africa. Thanks in part to the wider availability of generics, the average cost of antiretrovirals <a href="https://www.msf.org/patents-prices-patients-example-hivaids">fell dramatically</a>. And the <a href="https://www.wto.org/english/thewto_e/minist_e/min01_e/mindecl_trips_e.htm">2001 World Trade Organization Ministerial Conference in Doha, Qatar</a>, affirmed that public health and “access to medicines for all” would be paramount in the fight against HIV/AIDS and other epidemics.</p>
<p>Having succeeded in making antiretrovirals more affordable, activists pressed for an international program to purchase and distribute them. According to journalist Emily Bass, <a href="https://www.publicaffairsbooks.com/titles/emily-bass/to-end-a-plague/9781541762459/">external pressure from grassroots activists</a> gave global health advocates within the Bush administration, including National Institute of Allergy and Infectious Diseases Director and chief medical advisor Anthony Fauci, the opportunity to push forward their proposal for a massive effort by the U.S. to treat AIDS in Africa. That proposal quickly evolved into PEPFAR.</p>
<figure>
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<figcaption><span class="caption">John Robert Engole was the first patient to receive HIV treatment under PEPFAR.</span></figcaption>
</figure>
<p>Activists continued to shape PEPFAR as the program came together. They advocated for people with AIDS to be treated with generic antiretrovirals, which allowed more people to be treated than would otherwise be possible with patented drugs. And when it came time to renew PEPFAR in 2008, they <a href="https://healthgap.org/wp-content/uploads/2018/11/Bird-dogging-101.pdf">extracted promises from presidential candidates</a> to <a href="https://fpif.org/how_to_stop_aids_now/">reauthorize the program at $50 billion</a>, over three times Bush’s initial pledge.</p>
<p>Today, PEPFAR <a href="https://www.state.gov/where-we-work-pepfar/">works in over 50 countries</a>, including in Central and South America, Southeast Asia and the former Soviet Union. Since 2003, the program has injected <a href="https://www.kff.org/global-health-policy/fact-sheet/the-u-s-presidents-emergency-plan-for-aids-relief-pepfar/">over $100 billion</a> into the fight against global AIDS, although <a href="https://www.kff.org/global-health-policy/fact-sheet/the-u-s-presidents-emergency-plan-for-aids-relief-pepfar/#endnote_link_559116-23">annual funding levels have been flat for most of that time</a>. Yet despite stagnant funds, PEPFAR has brought treatment to an increasing number of people in need. That it has done so is in no small part thanks to the AIDS activists who fought to make generic antiretrovirals available, allowing the program to treat many more people than would otherwise be possible.</p>
<h2>Lessons unlearned</h2>
<p>To be sure, the Bush administration had its own reasons to address AIDS in Africa. National security experts at the U.S. State Department had <a href="https://uncpress.org/book/9780807872116/infectious-ideas/">long worried that AIDS would destabilize the continent</a>, as historian Jennifer Brier has shown, and PEPFAR burnished the president’s commitment to “<a href="https://newrepublic.com/article/86075/compassionate-conservative-hiv-pepfar-bush-gop-budget">compassionate conservatism” and faith-based social programs</a>. </p>
<p>But by the time of Bush’s announcement, grassroots activists had already spent years arguing in public that treating AIDS in Africa was not only possible but imperative. And their advocacy for low-cost generic antiretrovirals paved the way for global AIDS treatment on a scale that had once been thought impossible.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Protestors holding a black coffin, wearing paper skull masks and signs reading 'I died on an ADAP waiting list' and 'Gilead gouges gov' AIDS dollars'" src="https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/505646/original/file-20230120-4485-zn9j4t.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">AIDS protestors called upon pharmaceutical companies to lower drug pricing to affordable levels.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/AIDSHealthcareFoundationProtestatGileadSciences/3937be37fe0b45339e1518d5ad3c48b2">Alison Yin/AP Images for AIDS Healthcare Foundation</a></span>
</figcaption>
</figure>
<p>Unfortunately, U.S. responses to recent viral epidemics have not shown evidence that the nation has learned from the PEPFAR example. The <a href="https://doi.org/10.1038/d41586-022-03529-3">hoarding of COVID-19 vaccines</a> by the U.S. and other wealthy nations shows the same persistent disregard for human life that was evident in attempts to block generic medicines from reaching people who needed them. At the same time, millions of doses of a highly effective vaccine against mpox in the U.S. national vaccine stockpile were <a href="https://www.nytimes.com/2022/08/01/nyregion/monkeypox-vaccine-jynneos-us.html">allowed to expire</a> while outbreaks of the virus <a href="https://doi.org/10.1038/d41586-022-01686-z">raged in West and Central Africa</a> in 2022. And early 2023 announcements that Pfizer and Moderna may both price their COVID-19 vaccines at <a href="https://arstechnica.com/science/2023/01/moderna-may-match-pfizers-400-price-hike-on-covid-vaccines-report-says/">well over $100 per dose</a> in the U.S. recalls the exorbitant drug prices that aroused activist fury in the fight against AIDS.</p>
<p>PEPFAR has saved millions of lives, in no small part because activists thought big and fought hard for justice in the U.S. response to global AIDS. Although the program is far from perfect, it serves as a reminder of what is possible when solidarity guides responses to humanity’s biggest challenges, and the power of grassroots organizing in turning principles into policy.</p><img src="https://counter.theconversation.com/content/194908/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dan Royles has received funding from the National Endowment for the Humanities and the National Park Service. He is affiliated with the Miami-Dade Democratic Party. </span></em></p>The US PEPFAR initiative has brought HIV medication to millions of people globally. Behind this progress are the activists that pressured politicians and companies to put patients over patents.Dan Royles, Associate Professor of History, Florida International UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1902252022-12-18T13:16:47Z2022-12-18T13:16:47ZLong-acting injectable PrEP is a big step forward in HIV prevention<figure><img src="https://images.theconversation.com/files/501164/original/file-20221214-16278-cj9xs2.jpg?ixlib=rb-1.1.0&rect=66%2C473%2C6908%2C4429&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The HIV prevention drug cabotegravir, which is delivery by injection every eight weeks, is not yet available in Canada.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>One year ago, <a href="https://www.fda.gov/news-events/press-announcements/fda-approves-first-injectable-treatment-hiv-pre-exposure-prevention">the United States approved a new injectable drug that prevents HIV</a>. </p>
<p><a href="https://doi.org/10.1056/NEJMoa2101016">After successful clinical trials</a>, long-acting cabotegravir was found to be almost 100 per cent effective at preventing HIV. It was approved in the U.S. on Dec. 20, 2021, for use as HIV pre-exposure prophylaxis (PrEP). This approval means that eligible individuals can now receive this medication every eight weeks to prevent sexually-acquired HIV infection.</p>
<p>However this new drug, which would help address some of the <a href="https://www.cdc.gov/nchhstp/newsroom/fact-sheets/hiv/state-of-the-hiv-epidemic-factsheet.html#gains-challenges">ongoing challenges with HIV prevention</a> for those who remain at high risk, is still not available in Canada.</p>
<h2>HIV in Canada</h2>
<p>The number of new HIV infections has not changed much over the past couple of decades and <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90.html">approximately 13 per cent of people living with HIV in Canada are undiagnosed</a>. This demonstrates the need for more HIV prevention strategies. </p>
<p>While long-acting injectable PrEP is new, oral PrEP — <a href="https://www.catie.ca/pre-exposure-prophylaxis-prep-0">a pill taken either daily or around sexual activity</a> — was approved in the U.S. back in 2012. <a href="https://www.canada.ca/en/public-health/services/reports-publications/canada-communicable-disease-report-ccdr/monthly-issue/2017-43/ccdr-volume-43-12-december-7-2017/hiv-pre-exposure-prophylaxis-use-canada.html">Canada only approved oral PrEP in 2016</a>. And we are once again falling behind the U.S. on making injectable PrEP available here.</p>
<p><a href="https://doi.org/10.1503/cmaj.220645">Oral PrEP already reduces the risk of HIV by almost 100 per cent</a> when taken consistently, but recent clinical trials show that injectable PrEP is even more effective. The main advantage of injectable PrEP is that going for injections every two months is a lot easier to remember than taking pills every day, or taking pills before and after sexual activity. The switch from oral pills to injectable shots means that individuals can more easily maintain adherence, which impacts the overall effectiveness of PrEP as HIV prevention.</p>
<figure class="align-center ">
<img alt="Close-up of a hand with four blue caplets in the palm." src="https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=424&fit=crop&dpr=1 600w, https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=424&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=424&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=533&fit=crop&dpr=1 754w, https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=533&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/500660/original/file-20221213-4932-7g9lp5.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=533&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Oral PrEP reduces the risk of HIV infection, but injectable PrEP would offer a long-acting option.</span>
<span class="attribution"><span class="source">(AP Photo/Jeff Chiu)</span></span>
</figcaption>
</figure>
<p>Although some people might prefer pills to shots for various reasons, injectable PrEP provides another option, and <a href="https://doi.org/10.1038/s41598-021-01634-3">people like having different HIV prevention options available to them</a>. At the individual level, injectables mean more choices. At the population level, more choices mean more prevention because different people might be willing to use different kinds of PrEP to suit their needs.</p>
<p>Contraception research has also demonstrated the importance of expanding people’s medication options. <a href="https://my.clevelandclinic.org/health/drugs/4086-depo-provera%C2%AE-birth-control-shot#:%7E:text=Commonly%20referred%20to%20as%20the,taken%20according%20to%20the%20schedule.">Injectable contraceptives</a> highlight how this technology improves both sexual and reproductive health.</p>
<p><a href="https://doi.org/10.1093/cid/cit085">Oral PrEP is often compared with the birth control pill</a>. There is a need to better understand how new injectable options for both contraception and HIV prevention affect adherence, access and the relationships of those who use them. </p>
<p>Both injectable and oral PrEP are safe and highly effective and they each have very few side-effects. Injectable PrEP has mild injection site reactions, including swelling, redness and pain.</p>
<p>There are also <a href="https://blog.catie.ca/2022/03/25/the-future-of-prep-is-now/">several other new HIV PrEP options</a> that are still being studied in clinical trials, including exciting long-acting oral, injectable, implantable and infusion options that are administered at different time intervals and could fit the different schedules and preferences of people interested in HIV prevention.</p>
<h2>Preparing for prevention</h2>
<p>We can be ready for these new developments by learning from our past experiences with the approval and implementation of previous HIV prevention strategies, like oral PrEP. Some individuals and communities still face barriers to PrEP, <a href="https://www.catie.ca/prevention-in-focus/overcoming-barriers-to-prep-program-models-using-diverse-settings-and-providers">like access to health-care providers who are knowledgeable about it</a>, and these barriers can perpetuate health inequalities.</p>
<p>Our research project, <a href="https://www.cbrc.net/futureofprep">The Future of PrEP is Now</a>, focuses specifically on community readiness for long-acting injectable PrEP because it has the potential to help overcome previous barriers to PrEP. Oral PrEP can still be inaccessible, expensive and stigmatized for many people in Canada and the one-pill-a-day adherence can be especially challenging. </p>
<p>Communities of Two-Spirit, gay, bisexual, queer and other men who have sex with men (2SGBQM) are <a href="https://www.catie.ca/the-epidemiology-of-hiv-in-canada">still disproportionately affected by HIV, and HIV rates are not declining in Canada</a>. 2SGBQM are also under-reached by existing PrEP programs, especially those who are Indigenous, Black, people of colour, rural, people who use substances, transgender and non-binary.</p>
<p>In our research, we talk to members of under-reached communities of 2SGBQM as well as the health-care providers who serve them to:</p>
<ol>
<li>learn their preferences regarding future long-acting injectable PrEP options</li>
<li>assess the feasibility of various models of delivering injectable PrEP </li>
<li>design a national study of injectable PrEP that responds to the needs and priorities of individuals already experiencing barriers to oral PrEP.</li>
</ol>
<p>In a recent public webinar, we asked <a href="https://www.catie.ca/prep-where-are-we-going">“where are we going?”</a> with PrEP as we plan for a long-acting injectable option to become available in Canada in the near future. We want to ensure that when this new treatment is approved, long-acting PrEP is quickly available and as equally accessible as oral PrEP to those who will benefit from it the most. Raising awareness and building support for this new HIV prevention strategy will help meet those goals.</p><img src="https://counter.theconversation.com/content/190225/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Michael Montess receives funding from the Canadian Institutes of Health Research, Mitacs, the Social Sciences and Humanities Research Council, and the Michael Smith Foundation for Health Research. He is affiliated with the University of Victoria. </span></em></p><p class="fine-print"><em><span>Darrell Tan receives funding from the Canada Research Chairs program, the Canadian Institutes of Health Research, the CIHR Canadian HIV Trials Network, the Public Health Agency of Canada, the Canadian Foundation for AIDS Research, and the Ontario HIV Treatment Network. He is affiliated with St. Michael's Hospital and the University of Toronto. </span></em></p><p class="fine-print"><em><span>Nathan John Lachowsky receives funding from the Canadian Institutes of Health Research, Social Sciences and Humanities Research Council, MITACS, Public Health Agency of Canada, Canadian Blood Services, Canadian Foundation for AIDS Research, Michael Smith Health Research British Columbia, Government of British Columbia, Vancouver Foundation, and Victoria Foundation. He is affiliated with the Community Based Research Centre.</span></em></p>The next step in HIV prevention — long-acting injectable pre-exposure prophylaxis (PrEP) — is not yet available in Canada, a year after its approval in the U.S.Michael Montess, Postdoctoral Associate, Rotman Institute of Philosophy, Western UniversityDarrell Tan, Clinician-Scientist, St. Michael’s Hospital; Associate Professor, Faculty of Medicine, University of TorontoNathan John Lachowsky, Associate Professor, Public Health & Social Policy; Special Advisor Health Research, Office of the Vice-President Research and Innovation, University of VictoriaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1883282022-12-14T13:13:45Z2022-12-14T13:13:45ZMpox, AIDS and COVID-19 show the challenges of targeting public health messaging to specific groups without causing stigma<figure><img src="https://images.theconversation.com/files/500108/original/file-20221209-33805-9vw3eu.jpg?ixlib=rb-1.1.0&rect=1%2C0%2C1020%2C708&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Fear-based public health messaging can both motivate and alienate at-risk groups.</span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/AIDSCrisis1987/8d02dadb8af04606bed1a5f9f6100ba1">AP Photo/Gillian Allen</a></span></figcaption></figure><p>During infectious disease outbreaks, clinicians and public health officials are tasked with providing accurate guidance for the public on how to stay safe and protect themselves and their loved ones. However, <a href="https://doi.org/10.3390%2Fijerph19148550">sensationalized media coverage</a> can distort how the public perceives new emerging infections, including where they come from and how they spread. This can foster <a href="https://doi.org/10.1016/j.lanepe.2022.100536">fear and stigma</a>, especially toward communities that are already mistrustful of the health care system.</p>
<p>The racial and sexual <a href="https://doi.org/10.3389/fpsyg.2021.648086">stigma surrounding monkeypox</a> is what spurred the World Health Organization to <a href="https://www.who.int/news/item/28-11-2022-who-recommends-new-name-for-monkeypox-disease">rename the disease to mpox</a> in November 2022. While this is a step in the right direction, I believe more work needs to be done to reduce the stigma surrounding infectious diseases like mpox.</p>
<p>I am an <a href="https://profiles.dom.pitt.edu/faculty_info.aspx/Ho5747">infectious disease researcher</a> who studies HIV, COVID-19 and mpox. During the COVID-19 pandemic, I was the lead investigator at the University of Pittsburgh for a <a href="https://www.coronaviruspreventionnetwork.org/compass-clinical-study">national survey</a> looking at how COVID-19 has affected different communities. Effective public health communication isn’t easy when conflicting messages may come from many sources, including family and friends, other community members or the internet. But there are ways that public health officials can make their own messaging more inclusive while mitigating stigma.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Posters promoting condom use reading " src="https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/500110/original/file-20221209-41828-ft8xxk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Tailoring public health messages to target groups could improve their reach.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/posters-that-promote-healthy-sexual-behavior-hang-inside-news-photo/160899714">Chip Somodevilla/Getty Images</a></span>
</figcaption>
</figure>
<h2>Creating an inclusive message</h2>
<p>Inclusive public health messaging can motivate the public to make better decisions regarding their personal health and the health of others. This effort often involves engaging the communities most affected by an outbreak. Unfortunately, because these communities are heavily affected by the infection and tend to <a href="https://www.ama-assn.org/delivering-care/health-equity/impact-covid-19-minoritized-and-marginalized-communities">experience some form of inequity</a>, they are often blamed by society for spreading the disease.</p>
<p>COVID-19 drove an increase in hate crimes related to the pandemic against <a href="https://doi.org/10.1007/s12103-020-09545-1">Chinese and other Asian communities</a> in the United States. A <a href="https://healthpolicy.ucla.edu/newsroom/press-releases/pages/details.aspx">2022 UCLA survey</a> found that 8% of Asian American and Pacific Islander adults in California experienced a COVID-19 related hate incident.</p>
<p>Effective public health messaging can focus on the fact that while infections may first affect certain groups of people, they often <a href="https://doi.org/10.1098/rstb.2014.0111">spread to other groups</a> and eventually encompass entire communities. Infections are caused by bacteria, viruses and fungi. They don’t discriminate by race, gender or sexual orientation. Messages that focus on the pathogens, rather than the communities, may reduce stigma.</p>
<p><a href="https://www.cdc.gov/poxvirus/monkeypox/resources/reducing-stigma.html">Visually inclusive messages</a> are also likely to engage a greater portion of the community. Examples include making sure that the people represented in posters and flyers, images on TV and websites, and other informational material are from diverse backgrounds. This sends a more unified message that what affects an individual also affects the larger community.</p>
<h2>Avoiding blame and fear</h2>
<p>Many media outlets, especially on social media, use <a href="https://theconversation.com/does-scaring-people-work-when-it-comes-to-health-messaging-a-communication-researcher-explains-how-its-gone-wrong-during-the-covid-19-pandemic-174287">fear-based messaging</a> to report on infectious diseases. While this may reinforce certain protective behaviors, such as using condoms during sex, it may also increase stress and anxiety. Fear-based messages also <a href="http://dx.doi.org/10.1136/bmjgh-2019-001911">worsen stigma</a>, leading to increased discrimination against communities that are already vulnerable and mistrustful of health care. Ultimately, this leads people to avoid seeking health care and can worsen health outcomes.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/TRGZcNMR24o?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Normalizing sexual health could help reduce stigma around sexually transmitted infections.</span></figcaption>
</figure>
<p>Public health officials have often used fear-based messaging in response to sexually transmitted infections, or STIs, like <a href="https://doi.org/10.1016%2FS2352-3018(21)00078-3">HIV</a>, <a href="http://dx.doi.org/10.1080/01292986.2017.1384030">chlamydia</a> and <a href="https://doi.org/10.1080/01292980600857831">gonorrhea</a>. Sex itself is <a href="https://magazine.jhsph.edu/2022/stigmas-toll-sexual-and-reproductive-health">highly stigmatized</a> by society. I have found that some of my patients would prefer to avoid getting tested and treated for an STI rather than deal with the <a href="https://www.verywellhealth.com/the-stigma-stds-have-in-society-3133101">shame of having an STI</a>.</p>
<p>Making sexual health and STI testing <a href="https://doi.org/10.1016/j.eclinm.2021.100764">routine and integral</a> parts of overall wellness and health is an important step to reduce the stigma around them. Similarly, messaging that normalizes the challenges faced by people at risk for certain infections could help avoid causing shame.</p>
<h2>Tailoring the message</h2>
<p>Infections affect different people differently. <a href="https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html">COVID-19</a> might be a mildly stuffy nose for one person, and it could be months in an intensive care unit hooked up to a ventilator for another. Messages that <a href="https://www.hsph.harvard.edu/ecpe/the-importance-of-getting-the-message-right-in-your-risk-communication-strategy/">focus on the successes</a> of medical and public health interventions that resonate with communities are most likely to be successful.</p>
<p>Different groups have different exposure risks as well. Mpox heavily affected gay and bisexual men in 2022. One reason why was related to how the virus is transmitted. <a href="https://www.cdc.gov/poxvirus/monkeypox/if-sick/transmission.html#">Prior research</a> suggested that mpox was largely transmitted by close skin-to-skin contact, but <a href="https://www.nbcnews.com/nbc-out/out-health-and-wellness/sex-men-not-skin-contact-fueling-monkeypox-new-research-suggests-rcna43484">emerging studies</a> raised the question of whether the 2022 outbreaks were being driven more by sexual transmission.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Person passing poster with health information on mpox" src="https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=394&fit=crop&dpr=1 600w, https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=394&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=394&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=495&fit=crop&dpr=1 754w, https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=495&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/500109/original/file-20221209-40125-yviwsg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=495&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The 2022 mpox outbreaks predominantly affected gay and bisexual men.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/poster-on-commercial-street-in-provincetown-ma-on-the-issue-news-photo/1242177865">Jonathan Wiggs/The Boston Globe via Getty Images</a></span>
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</figure>
<p>There was <a href="https://www.npr.org/2022/07/26/1113713684/monkeypox-stigma-gay-community">controversy</a> as to whether public health messaging should highlight sexual encounters as a potential transmission route. This can risk further stigmatizing gay and bisexual men versus potentially overlooking these key at-risk populations. <a href="https://www.scientificamerican.com/article/monkeypox-is-a-sexually-transmitted-infection-and-knowing-that-can-help-protect-people">Some advocates argued</a> that promoting the message that mpox was primarily transmitted by close contact would prevent resources and interventions from reaching the groups of people most affected by the disease.</p>
<p>One size does not always fit all when it comes to public health messaging. Multiple messages may be necessary for different groups of people based on their risk of infection or severe disease. An August 2022 Centers for Disease Control and Infection survey found that <a href="http://dx.doi.org/10.15585/mmwr.mm7135e1">50% of gay and bisexual men</a> reduced their sexual encounters in response to the mpox outbreak. Since late summer, <a href="https://www.npr.org/sections/health-shots/2022/08/26/1119659681/early-signs-suggest-monkeypox-may-be-slowing-in-the-u-s">mpox rates have been dropping</a> rapidly, and many experts think that both behavior change and vaccination may have contributed to the falling rates. Studies like these further support the importance of directly engaging with communities to encourage healthy behavior change.</p>
<h2>Trusted messengers</h2>
<p>Mistrust is also a barrier to effective messaging. Some communities may be mistrustful of medical and health care systems because of prior histories of exploitation, such as the <a href="https://www.mcgill.ca/oss/article/history/40-years-human-experimentation-america-tuskegee-study">Tuskegee study</a>, where researchers prevented Black participants from receiving syphilis treatment for decades in the mid-20th century, and ongoing fear of mistreatment.</p>
<p>Identifying trusted community champions and health care providers – especially ones who belong to that community – to deliver a public health message may increase its acceptance. One <a href="https://doi.org/10.1257/aer.20181446">2019 study</a>, for example, found that Black men were more likely to accept vaccines, medical advice and engage in health care services if they had a Black health care provider.</p>
<p>Effectively delivering public health messaging is a complicated and challenging process. But talking to and listening to the communities most affected by an outbreak can make a difference.</p><img src="https://counter.theconversation.com/content/188328/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ken Ho does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Prejudice and stigma can discourage the communities most affected by infectious diseases from seeking care. Inclusive public health messaging can prevent misinformation and guide the most vulnerable.Ken Ho, Assistant Professor of Infectious Diseases, University of PittsburghLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1955422022-12-01T21:03:51Z2022-12-01T21:03:51ZOn World AIDS Day, Canada must lead the way in combating HIV-AIDS<figure><img src="https://images.theconversation.com/files/498368/original/file-20221201-12-91tm7n.jpg?ixlib=rb-1.1.0&rect=0%2C17%2C3888%2C2566&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Provinces like British Columbia have reduced infection rates thanks to successful treatment and prevention measures. </span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Dec. 1 marks <a href="https://www.worldaidsday.org/">World AIDS Day</a>. As researchers focused on fighting the HIV-AIDS epidemic, we are increasingly concerned all the progress made in the fight against the virus is at risk. </p>
<p>In 1996, the first remarkable breakthrough against the HIV-AIDS epidemic came with the novel combination of drugs that became known as <a href="https://www.ncbi.nlm.nih.gov/books/NBK554533/">Highly Active Antiretroviral Therapy (HAART)</a>.</p>
<p>For the first time, HAART was able to stop viral replication and render the virus undetectable in blood and bodily fluids, and consequently promote immune reconstitution. This in turn would prevent an HIV infection from developing into AIDS, significantly reducing premature deaths.</p>
<h2>Treatment as prevention</h2>
<p>The next major breakthrough came in the early 2000s. Through close monitoring of the epidemic in British Columbia, our research documented that HIV infected individuals who have consistent viral suppression with HAART are virtually unable to transmit the infection. This led us to recommend initiating HAART immediately following HIV diagnosis to accelerate overall HIV/AIDS control. </p>
<p>We called the strategy <a href="https://bccfe.ca/tasp/about">Treatment as Prevention</a> (TasP) to illustrate the fact that HAART simultaneously stops progression to AIDS, premature death and HIV transmission.</p>
<p>TasP was enthusiastically embraced by the Joint United Nations (UN) Programme on HIV/AIDS (UNAIDS), in 2010. However, it soon became apparent that the TasP strategy was too ill defined, and this open the door for it to be inconsistently deployed between regions.</p>
<p>In 2014, <a href="http://www.unaids.org/sites/default/files/media_asset/JC2670_UNAIDS_Treatment_Targets_en.pdf">UNAIDS unveiled two sequential TasP-inspired targets</a> to quantify the proportion of people living with HIV who need to be diagnosed, the proportion of diagnosed people who need to be on HAART, and the proportion of people on HAART who need to be <a href="https://www.hiv.gov/hiv-basics/staying-in-hiv-care/hiv-treatment/viral-suppression">virologically suppressed</a> by 2020 and 2025. Viral suppression is defined by having less than 200 copies of HIV per milliliter of blood.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&rect=0%2C300%2C3085%2C1958&q=45&auto=format&w=1000&fit=clip"><img alt="A white flag with the words World Aids day and a red ribbon flies in front of the peace tower." src="https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&rect=0%2C300%2C3085%2C1958&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=440&fit=crop&dpr=1 600w, https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=440&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=440&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=553&fit=crop&dpr=1 754w, https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=553&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/498367/original/file-20221201-26-iq7whf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=553&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Canada has made breakthroughs in the fight against HIV-AIDS, but more must be done to make access to treatment more equitable.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Justin Tang</span></span>
</figcaption>
</figure>
<p>These targets were specifically designed so that by 2030 the world would see a 90 per cent decrease in AIDS mortality and new HIV infections, and meet the goal of ending the HIV-AIDS pandemic. In 2015, the UN <a href="https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2021/june/20210608_hlm-opens">formally endorsed</a> the <a href="https://doi.org/10.7448%2FIAS.19.1.20917">90-90-90 by 2020</a> target. It endorsed our subsequent <a href="https://bccfe.ca/blog/united-nations-adopts-ambitious-95-95-95-95-target">95-95-95 by 2025</a> target in 2021. </p>
<p>However, a lack of leadership and resources have hampered progress towards the UN targets around the world. This has been exacerbated by the COVID-19 pandemic, which disrupted some medical services, decreased HIV testing, interrupted the provision of HAART and diverted funding. </p>
<h2>Differing success rates across Canada</h2>
<p>In 2020, the Public Health Agency of Canada (PHAC) released a much-awaited <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/hiv-canada-surveillance-report-december-31-2020.html">epidemiological HIV/AIDS update</a>. The update came ahead of the <a href="https://aids2022.org/2022/04/29/the-international-aids-conference-returns-to-montreal/">International AIDS Conference</a> held in Montréal in July 2022. </p>
<p>Unfortunately, the results were rather concerning. HIV cases in Canada have remained flat since the 1990s, but there is a marked contrast between British Columbia and the rest of the country. While B.C. saw a steady decline in cases between 1996 and 2020, the rest of Canada saw no further reduction in cases over the same period. </p>
<p>HIV cases peaked throughout Canada in the early 80s. But a decrease in high-risk sexual practices led to a substantial reduction in cases. After that, the course of the epidemics diverged. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="HIV incidence across Canada and B.C. from 1980-2020" src="https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=263&fit=crop&dpr=1 600w, https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=263&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=263&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=330&fit=crop&dpr=1 754w, https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=330&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/498393/original/file-20221201-20-syova6.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=330&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">HIV cases from 1980 until 2020 in Canada and British Columbia.</span>
<span class="attribution"><span class="source">(Public Health Agency of Canada 2020 National HIV Estimates Report)</span></span>
</figcaption>
</figure>
<p>The reason for this discrepancy can be explained by the success of TasP in B.C., where the strategy originated. The graph below compares progress toward the UN’s 2020 target across Canada’s provinces and territories.</p>
<p>B.C., Nova Scotia, Newfoundland and Labrador and the three territories are the only Canadian jurisdictions that surpassed all three components of the <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90.html#s10">benchmark target</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A chart showing Canadian provinces' progress towards the UNAIDS 90-90-90 targets" src="https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=405&fit=crop&dpr=1 600w, https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=405&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=405&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=509&fit=crop&dpr=1 754w, https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=509&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/498340/original/file-20221130-24-rlmqen.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=509&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Estimated percentage of people living with HIV diagnosed, on treatment and virally suppressed by selected regions in Canada at the end of 2020.</span>
<span class="attribution"><span class="source">(Public Health Agency of Canada 2020 National HIV Estimates Report)</span></span>
</figcaption>
</figure>
<p>A failure to optimally implement TasP nationally has led to markedly different <a href="https://www.canada.ca/en/public-health/services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90.html">HIV rates</a> across the country. In 2020, the national HIV incidence rate was 4.8 per 100,000 people. B.C., which had the highest domestic incidence rate at the peak of the epidemic in the 1980s, was well below the national average, at 2.5 per 100,000 population. The province is now at the low end of the national spectrum, together with the territories and Atlantic provinces at 2.1 and 2.2 per 100,000 population, respectively. </p>
<p>Alberta and Ontario were within the range of the national average at 4.2 and 4.1 per 100,000 population. At the other end, Saskatchewan, Manitoba and Québec were above the national average at 23.0, 7.7 and 5.8 per 100,000 population, respectively. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Map of Canadian provinces & territories showing HIV incidence rates in 2020." src="https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=497&fit=crop&dpr=1 600w, https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=497&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=497&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=625&fit=crop&dpr=1 754w, https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=625&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/498341/original/file-20221130-22-542xnm.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=625&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">HIV rates in Canada by province and territory in 2020.</span>
<span class="attribution"><span class="source">(Public Health Agency of Canada 2020 National HIV Estimates Report)</span></span>
</figcaption>
</figure>
<h2>What Canada needs to do</h2>
<p>Clearly, Canada has the tools and the means to end the epidemic. The question remains, are we up to the task? The key requirements are well known: </p>
<ol>
<li>Normalize HIV testing to ensure everybody knows their HIV status.</li>
<li>Remove barriers to <a href="https://www.ohtn.on.ca/out-of-pocket-costs-associated-with-hiv-in-publicly-funded-high-income-health-care-settings/">accessing health services</a>. </li>
<li>Expand support for affected populations, with particular emphasis on harder-to-reach and most affected populations (men who have sex with men, people dealing with substance use, sex workers, inmates, immigrants and First Nations Peoples).</li>
<li>Make free harm reduction services widely available (condoms, lubricants, injection and smoking paraphernalia, supervised injection and smoking consumption sites and safer drug supply programs).</li>
<li><a href="https://doi.org/10.9778/cmajo.20180058">Free HAART</a> for all HIV-positive people.</li>
<li>Free <a href="https://www.cdc.gov/hiv/risk/prep/index.html">pre-exposure prophylaxis (PrEP)</a> to all people at heightened HIV risk.</li>
<li>Free relevant laboratory monitoring for all those on HAART or PrEP. </li>
</ol>
<p>In addition, we must demand full transparency and accountability from our health-care system. That starts with PHAC annually reporting progress towards the UN 95-95-95 by 2025 target, HIV prevalence and AIDS-related mortality. </p>
<p>Finally, the federal government should sponsor a yearly independent summit of all relevant stakeholders to promote accountability and transparency, compare regional progress and share lessons learned in the process. </p>
<p>As a leader in treatment and prevention, Canada has a global responsibility to optimally implement a strategy to effectively combat HIV-AIDS. That will require a major commitment from the provinces given that health care is a provincial responsibility. </p>
<p>Canada knows how to end the HIV-AIDS epidemic. It is high time to get it done.</p><img src="https://counter.theconversation.com/content/195542/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julio Montaner has received support, paid to his institution, from the BC Ministry of Health, Health Canada, the Public Health Agency of Canada, Genome BC, Vancouver Coastal Health and the VGH Foundation. Institutional grants have been provided by Gilead, Merck and ViiV Healthcare.</span></em></p><p class="fine-print"><em><span>Viviane Dias Lima receives funding from the Canadian Institutes of Health Research (PJT-148595; PJT-156147), and the Canadian Foundation for AIDS Research (CANFAR Innovation Grant – 30-101). </span></em></p>Dec. 1 marks World AIDS Day. Canada has the tools and means to end the epidemic. The question remains, are we up to the task?Julio Montaner, Killam Professor, Department of Medicine, University of British ColumbiaViviane Dias Lima, Scientist, Senior Methodologist & Associate Professor, Department of Medicine, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1954772022-11-30T09:11:42Z2022-11-30T09:11:42ZEnding HIV as a public health threat – 3 essential reads<figure><img src="https://images.theconversation.com/files/497976/original/file-20221129-24-kfmdkj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>In 2014 the United Nations set an <a href="https://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2014/november/20141118_PR_WAD2014report">ambitious goal</a>: to end the AIDS pandemic by the year 2030. </p>
<p>There have been significant advances in HIV treatment and prevention. Access to antiretroviral therapy has saved millions of lives. The UN estimates that since 2010 there’s been a <a href="https://www.unaids.org/en/resources/fact-sheet">52%</a> decrease in AIDS-related deaths. New infections have also fallen drastically.</p>
<p>But we’re far from out of the woods. A recent <a href="https://www.unaids.org/en/resources/documents/2022/in-danger-global-aids-update">report</a> warns that this progress is in danger if current conditions of inequality prevail. Experts across the board have identified inequality as a major challenge to efforts to end AIDS. </p>
<p>Over the years public health experts have written numerous articles for The Conversation Africa about the drivers of this pandemic. We’ve selected three here which highlight the complexity of the problem. </p>
<h2>Addressing inequalities</h2>
<p>UNAIDS executive director Winnie Byanyima <a href="https://theconversation.com/head-of-unaids-unpacks-the-knock-on-effects-of-covid-19-and-what-needs-to-be-done-168909">argues</a> that HIV, like COVID, feeds off inequalities. In an interview with Imraan Valodia, head of the Southern Centre for Inequality Studies at South Africa’s University of the Witwatersrand, Byanyima highlights how women who don’t have access to basic rights such as health and education pay the price in poverty, ill health and sometimes even death. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/head-of-unaids-unpacks-the-knock-on-effects-of-covid-19-and-what-needs-to-be-done-168909">Head of UNAIDS unpacks the knock-on effects of COVID-19. And what needs to be done</a>
</strong>
</em>
</p>
<hr>
<h2>The vulnerability of women and girls</h2>
<p>Adolescent girls and young women are particularly vulnerable to HIV infection. It’s estimated that every week 4,900 women between 15 and 24 years old acquire HIV. Women in this age group are twice as likely as their male counterparts to be living with HIV. Unequal gender dynamics often make it difficult for young women to negotiate whether, when, or how they want to have sex. But there is a way for adolescent girls and young women to protect themselves without having to negotiate condom use. Pre-exposure prophylaxis, or PrEP, is a pill containing antiretroviral drugs that can help prevent HIV. Morten Skovdal, associate professor of health psychology, <a href="https://theconversation.com/six-ways-to-improve-hiv-prevention-pill-uptake-among-young-women-in-zimbabwe-184494">asked</a> Zimbabwean healthcare workers for pointers on how to improve access to PrEP for young women.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/six-ways-to-improve-hiv-prevention-pill-uptake-among-young-women-in-zimbabwe-184494">Six ways to improve HIV prevention pill uptake among young women in Zimbabwe</a>
</strong>
</em>
</p>
<hr>
<h2>Barriers to treatment</h2>
<p>The risk of HIV infection and the uptake of treatment or prevention measures are influenced by several factors. These include biology, people’s behaviour and their social contexts. Behavioural scientist Hilton Humphries <a href="https://theconversation.com/how-inequality-drives-hiv-in-adolescent-girls-and-young-women-172624">explains</a> how individuals make decisions about whether to use PrEP, in the context of structural inequalities that sustain risk – things that individuals can’t always control.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-inequality-drives-hiv-in-adolescent-girls-and-young-women-172624">How inequality drives HIV in adolescent girls and young women</a>
</strong>
</em>
</p>
<hr>
<img src="https://counter.theconversation.com/content/195477/count.gif" alt="The Conversation" width="1" height="1" />
Experts across the board have identified inequality as a major challenge to efforts to end AIDS.Ina Skosana, Health + Medicine Editor (Africa edition)Licensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1953052022-11-28T11:55:03Z2022-11-28T11:55:03ZHIV prevention: new injection could boost the fight, but some hurdles remain<figure><img src="https://images.theconversation.com/files/497219/original/file-20221124-7159-uy40xe.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>While the world has focused on the COVID pandemic for nearly three years, less and less attention is being paid to HIV. However, HIV is still a global problem. In 2021, according to the United Nations, <a href="https://www.unaids.org/en/resources/documents/2022/UNAIDS_FactSheet">38.4 million</a> people were living with HIV, over 650,000 died from AIDS-related illnesses, and 1.5 million became newly infected. </p>
<hr>
<iframe id="noa-web-audio-player" style="border: none" src="https://embed-player.newsoveraudio.com/v4?key=x84olp&id=https://theconversation.com/hiv-prevention-new-injection-could-boost-the-fight-but-some-hurdles-remain-195305&bgColor=F5F5F5&color=D8352A&playColor=D8352A" width="100%" height="110px"></iframe>
<p><em>You can listen to more articles from The Conversation, narrated by Noa, <a href="https://theconversation.com/us/topics/audio-narrated-99682">here</a>.</em></p>
<hr>
<p>Nearly 70% of infections occur in key groups: sex workers and their clients, men who have sex with men, people who inject drugs, and transgender people and their sexual partners. Adolescent girls and young women in sub-Saharan Africa are another important group, with nearly 5,000 getting HIV every week. </p>
<p>For many years, options for HIV prevention were quite limited. Early campaigns consisted of the ABCs – abstinence, being faithful, and condoms. In the early 2000s, male circumcision was added, but multiple attempts at developing a vaccine have been disappointing. </p>
<p>In 2012, however, much excitement surrounded the introduction of HIV pre-exposure prophylaxis, or PrEP. The initial form of PrEP was a combination oral pill consisting of two medications used to treat HIV – emtricitabine and tenofovir. When taken regularly, <a href="https://pubmed.ncbi.nlm.nih.gov/35545381/">PrEP is highly effective</a> in preventing HIV infection and very safe. PrEP was seen as a game-changer by enabling people to take charge of their sexual health, particularly for those who could not necessarily control when or how they had sex.</p>
<p>Oral <a href="https://pubmed.ncbi.nlm.nih.gov/35545381/">PrEP has worked well</a> for many, particularly for men who have sex with men in high income settings and for serodifferent couples (couples in which one person has HIV and the other does not). </p>
<p>For others – like young people – it’s hard to take a pill consistently during periods of risk for getting HIV. The interest is there, but lots of <a href="https://pubmed.ncbi.nlm.nih.gov/35147580/">things get in the way</a>. Some relate to the person, like forgetfulness, transport to a clinic, and alternative priorities. Other factors relate to stigma and lack of support. </p>
<p>PrEP administered via a <a href="https://www.nejm.org/doi/full/10.1056/nejmoa1506110">vaginal ring</a> is another safe option that’s been developed. It’s not yet clear how many people will want to use it as it becomes more widely available.</p>
<p>Access to PrEP has <a href="https://www.prepwatch.org/resources/global-prep-tracker/">been slow</a> and mostly limited to high income countries. Some countries, like Kenya, Uganda, South Africa, Zambia, and Nigeria, have been more proactive than others, but it is still hard for many to get PrEP.</p>
<p>Now that injectable PrEP is an option, it’s poised to make a huge difference in HIV prevention – as long as some key issues can be overcome.</p>
<h2>Benefits of injectable PrEP</h2>
<p>The latest version of PrEP is an injection of another HIV drug – cabotegravir (called CAB-LA for cabotegravir-long acting). It is given in the buttocks and lasts for two months. It is even more effective than <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00538-4/fulltext">oral PrEP and it’s safe</a>. </p>
<p>Another injectable drug – lenacapavir – would only need to be given once every six months, and would be easier to inject because it only needs to go into the skin; but it is still in clinical trials.</p>
<p>In many ways, injectable PrEP seems like a perfect solution. It’s discreet, there’s no burden of frequent pill taking, and it can be combined with other services and injections, like contraception for women. People in the CAB-LA trials in many parts of the world, including sub-Saharan Africa, South America, and the US, really liked it. Although some public health officials and healthcare workers have worried about the pain and any swelling due to the injection itself, most people do very well. </p>
<h2>Drawbacks of injectable PrEP</h2>
<p>Several issues, however, may get in the way of injectable PrEP revolutionising HIV prevention. </p>
<p>First, most people <a href="https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(22)00167-9/fulltext">can’t get it</a>. The United States was the first country to approve CAB-LA in December 2021. The next was Zimbabwe in October 2022. The necessary paperwork is being processed in other countries in sub-Saharan Africa, but regulatory processes are slow and access is likely be to a challenge for some time.</p>
<p>Second, it’s expensive. CAB-LA is priced at over <a href="https://www.nytimes.com/2022/09/27/health/injectable-prep-hiv-africa.html">$22,000 per person per year</a> in the US. It could be covered to some extent by health insurance companies, but not everyone has health insurance. The drug manufacturer will lower the price for the markets in low- and middle-income countries, but the exact cost is not yet known. Some estimates are around $250 per person per year. That’s still about five times as much as oral PrEP costs. The increased effectiveness may be worth it for people at high risk of getting HIV, but getting it to those people will be challenging for ministries of health.</p>
<p>Third, logistical issues complicate delivery of injectable PrEP, including the need for refrigerators to store the drug and nurses to give the injections. Clinics may not be set up to provide many injections in a given day, and limited availability may mean people can’t get the shots when they need them.</p>
<p>Finally, continuing to get injections over time is still likely to be a problem. The experience with injectable contraception has taught us that up to half of people who select that form of family planning <a href="https://pubmed.ncbi.nlm.nih.gov/32389457/">stop it within a year</a>. Injectable PrEP does not solve the other barriers people face, like transport to clinic and prioritisation of HIV prevention.</p>
<p>The lack of access raises important ethical concerns. Most of the thousands of people in the CAB-LA trials live in countries without access to it, including Botswana, Eswatini, Kenya, Malawi, South Africa, Uganda, and Zimbabwe among others. Processes to enable access are unacceptably slow, although the drug is available in the US (and just recently Zimbabwe). </p>
<h2>Where to go from here?</h2>
<p>Despite these challenges, injectable PrEP is a huge advantage for the HIV prevention toolbox. Choice is critical for most interventions to work, and HIV prevention is no different. <a href="https://pubmed.ncbi.nlm.nih.gov/35030296/">PrEP use increases</a> when people are given effective options and can choose what works best for them. </p>
<p>PrEP needs to be easier for people to take, for instance by making it more convenient and less medical. Programmes are starting to do this through community delivery. That approach may be more challenging with injections, but it may get easier with time and with injections in the skin, like lenacapavir.</p>
<p>Advocacy will be critical for expediting the regulatory process and negotiating with pharmaceutical companies to license other companies to produce more affordable generics.</p><img src="https://counter.theconversation.com/content/195305/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Jessica Haberer has been a consultant for Merck and the US Centers for Disease Control and Prevention. She has been an investigator in studies with drug donation from Gilead and Viiv. She has received grant funding from the US National Institutes of Health, USAID, and the Bill and Melinda Gates Foundation. </span></em></p>Some countries, like Kenya, Uganda, South Africa, Zambia, and Nigeria, have been more proactive than others, but it is still hard for many to get PrEP.Jessica Haberer, Director of Research, Massachusetts General Hospital Center for Global Health and Professor of Medicine, Harvard Medical School, Harvard UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1940912022-11-28T05:37:53Z2022-11-28T05:37:53ZKoos Prinsloo: the cult Afrikaans writer has been translated to English – here’s a review<figure><img src="https://images.theconversation.com/files/494663/original/file-20221110-13-qemcvy.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><span class="source">Randi Linford/EyeEm/Getty Images</span></span></figcaption></figure><p>There are some writers you wish you had encountered years ago. There are some authors you only discover – for many reasons – years after their death.</p>
<p>The Afrikaans writer <a href="https://johannesburgreviewofbooks.com/2018/12/05/fiction-issue-the-story-of-my-father-by-koos-prinsloo-newly-translated-by-michiel-heyns/">Koos Prinsloo</a> is one such, for me. He wrote during the last violent decade of <a href="https://www.sahistory.org.za/article/history-apartheid-south-africa">apartheid</a> – a system of forced racial segregation implemented by the Afrikaans-speaking white minority rulers of South Africa. While the country was undergoing states of emergency and increasing internal revolt, Prinsloo wrote from deep within the dominant white patriarchal culture. But his work spoke directly back to this domination by representing a maligned and repressed aspect of it. And this is of interest for us today.</p>
<p>Before his early death, of HIV-related causes in 1994, Prinsloo had published four groundbreaking collections of Afrikaans short stories: Jonkmanskas (a term for a clothes cupboard) in 1982, Die Hemel Help Ons (Heaven Help Us) in 1987, Slagplaas (Place of Slaughter) in 1992 and Weifeling (Hesitation) in 1993.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A book cover in green with a black and white photo montage showing a young man in a sports cap, close-up of fingers and a digital watch on a wrist." src="https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=914&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=914&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=914&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1149&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1149&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494465/original/file-20221109-11116-t0x84v.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1149&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption"></span>
<span class="attribution"><span class="source">Fourthwall Books</span></span>
</figcaption>
</figure>
<p><a href="https://fourthwallbooks.com/product/place-of-slaughter-and-other-stories/">Place of Slaughter and Other Stories</a>, published in October 2022 by Fourthwall Books in Johannesburg, is the first and most comprehensive translation into English of his work. The collection is translated by the University of the Witwatersrand academic Gerrit Olivier. Place of Slaughter includes all Prinsloo’s stories from Slagplaas and a significant selection from his other books; a total of 24 stories.</p>
<p>This collection represents a powerful voice that upends the long-held Afrikaner myths of heterosexual male identity, and speaks bravely for alternative identities.</p>
<h2>Who was Koos Prinsloo?</h2>
<p>Prinsloo was an Afrikaans journalist and short story writer, renowned for writings that blurred the line between fiction and autobiography, and that dared to depict gay sex and intimacy in a very frank, sometimes brutal, manner. (I am reminded of the paintings of the British painter <a href="https://www.tate.org.uk/art/artists/francis-bacon-682/who-is-francis-bacon">Francis Bacon</a>.)</p>
<p>Prinsloo was born in 1957 in Eldoret in Kenya. When he was five, the family moved to South Africa. His family settled at Ingogo, outside Newcastle, where his father got a job at the power station at Ingagane, and where Prinsloo matriculated at Newcastle High School. He completed his national military service in 1976 and thereafter enrolled for a bachelor of arts degree at the University of Pretoria.</p>
<p>Such facts we glean from the stories themselves – along with photographs of his father, known as Daan, the obituary of his grandfather, and detailed, often rambling footnotes. </p>
<h2>Life and art</h2>
<p>Prinsloo weaves out of the threads of his own biography a tapestry that is unsettling in its pitiless confrontation with childhood and adolescence, while at the same time oddly hyperreal. This practice is not without its moral or ethical concerns, and Prinsloo’s writing certainly did attract controversy during his life. Both for playing fast and loose with the names and historical accounts of recognisable people, but also for its middle-finger attitude to white Afrikaner nationalism and Afrikaner male power. </p>
<p>His second collection, <a href="https://mg.co.za/article/2008-07-09-states-of-emergency/">Die Hemel Help Ons</a>, was awarded the Rapport Prize, but the directors of <a href="https://www.netwerk24.com/rapport">Rapport</a> newspaper rescinded the award because a sentence in Border Story was adjudged disrespectful to then-president <a href="https://www.sahistory.org.za/people/pieter-willem-botha">PW Botha</a>.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A book cover featuring a black and white portrait of a man with short hair and round glasses, smiling wryly against a backdrop of natural vegetation." src="https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=800&fit=crop&dpr=1 600w, https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=800&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=800&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1005&fit=crop&dpr=1 754w, https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1005&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/494603/original/file-20221110-22-d8m4ew.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1005&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Translator Gerrit Olivier has published several works on Prinsloo.</span>
<span class="attribution"><span class="source">African Sun Media</span></span>
</figcaption>
</figure>
<p>Prinsloo worked for several newspapers and publishing houses, including the independent, left-wing weekly <a href="https://www.vryeweekblad.com">Vrye Weekblad</a> and Afrikaans daily <a href="https://www.netwerk24.com/beeld">Beeld</a>. The figure of a journalist, and particularly that of the writer, features prominently in his stories. It is never clear whether these are all the same man, or whether they are characters or versions of the writer’s self. Sometimes this person is referred to as the younger writer, sometimes The Main Character, sometimes The Poor Sod. Even The One. He. Often it is the simple I. Not infrequently, the one who begins a story in one voice – the so-called objective third person – suddenly switches and becomes the intimate I. </p>
<p>Prinsloo is unceasingly a writer engaged with the persona of himself as writer and with the tools or elements of his craft. He knows, too, that we the readers exist. He addresses us often, referring to us as the Dear Reader. His stories also cross-reference each other, re-presenting the same characters, such as The Pop Star, or family members, even the same factual events but told differently.</p>
<h2>Terrible beauty</h2>
<p>Prinsloo is a <a href="https://www.masterclass.com/articles/postmodern-literature-guide">postmodern writer</a>, yet the self-consciousness that is evident in these stories is in no way precious or superior. There is a shocking brutality – a carnality even – that functions both to expose male power and the violence of South Africa at that time (has much changed?) and to highlight the “terrible beauty” of the world as a place of desire and slaughter.</p>
<p>In a period of a mere 12 furious years, from 1982 until his death in 1994, Prinsloo produced the four collections of startling short stories that are assembled here in Place of Slaughter and Other Stories. It has been argued that his stories are significant because they are among the first fictional texts about HIV/Aids in South African literature. They pre-date the novel <a href="https://www.ohioswallow.com/book/Welcome+to+Our+Hillbrow">Welcome to our Hillbrow</a>, by the South African writer <a href="https://www.sahistory.org.za/people/phaswane-mpe">Phaswane Mpe</a>.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/the-case-of-the-acclaimed-south-african-novel-that-borrows-from-samuel-beckett-186142">The case of the acclaimed South African novel that 'borrows' from Samuel Beckett</a>
</strong>
</em>
</p>
<hr>
<p>I have a different take. I read all of these stories in a single weekend and I couldn’t help but think of the German Expressionist painters <a href="https://www.britannica.com/biography/George-Grosz">George Grosz</a> or <a href="https://www.britannica.com/biography/Max-Beckmann">Max Beckmann</a>. Or contemporary artists like <a href="https://www.guggenheim.org/artwork/artist/emilio-vedova">Emilio Vedova</a> or <a href="http://www.artnet.com/artists/g%C3%BCnter-brus/">Günter Brus</a>, whose graphic and daring work challenged the establishment.</p>
<p>The analogy with visual art is not far-fetched. Prinsloo writes with a visual artist’s sense of materiality: he is obsessed with the body; that we break and bleed. That we are abject in our longing. This makes him someone I wish I had encountered earlier; someone to read now.</p><img src="https://counter.theconversation.com/content/194091/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kobus Moolman does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Challenging myths about heterosexual white South African men, Prinsloo published four books of short stories in 12 years.Kobus Moolman, Professor of Creative Writing and English Literature, University of the Western CapeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1927462022-10-23T12:30:32Z2022-10-23T12:30:32ZPaying for plasma is the new normal: Why policy has changed decades after Canada’s tainted blood scandal<figure><img src="https://images.theconversation.com/files/491135/original/file-20221021-20-u4i9xy.JPG?ixlib=rb-1.1.0&rect=102%2C54%2C4449%2C2756&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Blood plasma and products made from it are used to treat conditions ranging from blood clotting disorders to immunodeficiencies to Rh-negative pregnancies.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/AP-Arnulfo Franco</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/paying-for-plasma-is-the-new-normal--why-policy-has-changed-decades-after-canada-s-tainted-blood-scandal" width="100%" height="400"></iframe>
<p>There has been a monumental policy shift in paying plasma donors in Canada.</p>
<p>In September, <a href="https://www.blood.ca/en/about-us/publications-and-reports/annual-reports">Canadian Blood Services</a> (CBS) made a <a href="https://www.grifols.com/en/view-news/-/news/grifols-enters-into-agreement-with-canadian-blood-services-to-accelerate-self-sufficiency-in-immunoglobulins-for-canada">15-year deal</a> with Spanish health-care giant Grifols for blood plasma collection and products. The deal upends the 1997 recommendations from the <a href="https://publications.gc.ca/site/eng/9.698032/publication.html?wbdisable=true">commission of inquiry into the tainted blood scandal</a> that urged no paid donations of blood or blood products.</p>
<p>More than 30,000 Canadians were infected with hepatitis C and another 2,000 contracted HIV from tainted blood and blood products during the ‘70s and ‘80s, resulting in more than <a href="https://www.thecanadianencyclopedia.ca/en/article/krever-inquiry">8,000 deaths</a>. </p>
<p>“The hemophilia community was decimated by HIV and hepatitis C through tainted blood,” David Page, national director of health policy at the <a href="https://www.chscontact.ca/">Canadian Hemophilia Society</a>, said at a <a href="https://sencanada.ca/en/Content/Sen/Committee/421/SOCI/53ev-54542-e">2019 Senate hearing</a>. </p>
<p>The <a href="https://publications.gc.ca/site/eng/9.698032/publication.html?wbdisable=true">Commission of Inquiry on the Blood System in Canada</a> released its final report in 1997. The recommendations were clear: do not pay blood donors, including those who donate plasma, “except in rare circumstances.” </p>
<h2>Policy shift</h2>
<p>Fast forward almost three decades and paying plasma donors is standard practice for <a href="https://giveplasma.ca/donors/compensation/">private plasma collection sites</a>. It’s supported by CBS (although it does not pay donors directly at its own sites), Health Canada and many of the groups most adversely affected by the tainted blood scandal, including <a href="https://chscontact.ca/chs-strongly-supports-cbs-plasma-initiative/">hemophiliacs</a> and those with <a href="http://www.cipo.ca/2022/08/15/update-on-canadian-blood-services-news/">primary immunodeficiency disorders</a> whose lives rely on plasma products.</p>
<figure class="align-center ">
<img alt="A window with the logo of Canadian Blood Services" src="https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/491136/original/file-20221021-3368-m4mvdw.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">In September, Canadian Blood Services made a deal with Spanish-based health-care giant Grifols for blood plasma collection and products.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Jeff McIntosh</span></span>
</figcaption>
</figure>
<p>Paid plasma donors can donate up to twice per week and can earn in excess of $500 per month by donating at the maximum frequency and volume of plasma collected, according to <a href="https://giveplasma.ca/donors/compensation/">Canadian Plasma Resources</a>, a company with plasma collection centres in the <a href="https://giveplasma.ca">Prairie provinces as well as New Brunswick</a>. </p>
<p>What caused this policy shift? Essentially: enhanced donor screening, rigorous regulation by both <a href="https://www.canada.ca/en/health-canada/services/drugs-health-products/biologics-radiopharmaceuticals-genetic-therapies/activities/fact-sheets/plasma-donation-canada.html">Health Canada</a> and the U.S. Food and Drug Administration, viral inactivation by heat or solvent processes and synthetic methods to produce some plasma products, namely clotting factors. </p>
<p>Page’s opinion has changed. In an interview, he said he feels that sufficient measures have been put in place to make plasma products safe, and supports using plasma from paid donors as a necessity to meet the health-care needs of Canadians. </p>
<p>In the quarter of a century since the tainted blood scandal there has not been a single case of disease transmission via a blood product in Canada, Page pointed out. He attributed this to enhanced regulatory and safety measures. </p>
<h2>Canada’s plasma supply</h2>
<p>The change in policy reflects a little-recognized truth about Canada’s blood system: It doesn’t come close to meeting the nation’s need.</p>
<p>In 2017 Health Canada established an expert <a href="https://www.canada.ca/en/health-canada/programs/expert-panel-immune-globulin-product-supply-related-impacts-canada/protecting-access-immune-globulins-canadians.html">panel on Immune Globulin Product Supply and Related Impacts</a>. It reported that more than 80 per cent of fractionated plasma products, namely immunoglobulins, comes from imported product, almost all from paid donors in the United States. It has cost CBS more than <a href="https://www.blood.ca/en/about-us/publications-and-reports/annual-reports">$700 million</a> a year. </p>
<p>CBS has set an objective of reducing dependence on imports of plasma-derived immunoglobulins to at least 50 per cent, and must do so “with a degree of urgency” <a href="https://drive.google.com/file/d/1_H5PI2JZFqmD_VP7z1ESDrO5AZmAa0sO/view">says Graham Sher</a>, CEO of CBS. </p>
<p>The new <a href="https://www.grifols.com/en/view-news/-/news/grifols-enters-into-agreement-with-canadian-blood-services-to-accelerate-self-sufficiency-in-immunoglobulins-for-canada">deal with Grifols</a> will provide 2.4 million grams of plasma-derived immunoglobulins, collected from Canadian donors, helping CBS reach its targets. </p>
<p>The company entered the Canadian market in 2011 and has a plasma fractionation plant in Montréal and a plasma collection site in Winnipeg. In addition, Grifols plans to expand paid plasma donor sites in Ontario and British Columbia as agents of CBS. </p>
<p>Neither side will reveal the contract details.</p>
<p>The deal with Grifols, by itself, will not meet CBS’s 50-per-cent target. To make up the difference <a href="https://www.blood.ca/en/about-us/media/newsroom/securing-canadas-plasma-supply">CBS plans</a> to increase its own dedicated plasma collection sites from five to 11 by 2024. CBS’s own plasma donation sites will remain uncompensated. </p>
<h2>Plasma and plasma products</h2>
<figure class="align-center ">
<img alt="Gloved hands holding up an IV bag filled with yellow fluid" src="https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&rect=154%2C32%2C5280%2C3837&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=428&fit=crop&dpr=1 600w, https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=428&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=428&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=538&fit=crop&dpr=1 754w, https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=538&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/491134/original/file-20221021-13-d4alyq.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=538&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Plasma donation can take up to two hours, significantly longer than donating whole blood.</span>
<span class="attribution"><span class="source">(AP Photo/Juan Karita)</span></span>
</figcaption>
</figure>
<p>Plasma differs from the whole blood that is collected for transfusion at donor clinics across the country. </p>
<p>During plasma collection, red and white blood cells and platelets are returned to the donor, leaving a straw-coloured liquid called plasma. This process is called <a href="https://www.canada.ca/en/health-canada/services/drugs-health-products/biologics-radiopharmaceuticals-genetic-therapies/activities/fact-sheets/plasma-donation-canada.html">plasmapheresis</a>. </p>
<p>Essential proteins, such as albumin, clotting factors and immunoglobulins, are recovered from the plasma through <a href="https://www.blood.ca/en/about-us/media/newsroom/plasma-and-blood-system-supply-chain">fractionation</a>.</p>
<p>Such plasma is called “source plasma” and is used only after it has been treated to remove or inactivate viruses and other pathogens. CBS cannot supply sufficient source plasma products, namely immunoglobulins, from unpaid donors, to meet the needs of Canadians and has been buying fractionated plasma products since its inception in 1998. It spent more than $200 million on plasma in 2000 and within the last five years has spent more than <a href="https://annual2019.blood.ca/?_ga=2.139020853.760828163.1666374799-375334784.1662912652&_gl=1*1ba3sb6*_ga*Mzc1MzM0Nzg0LjE2NjI5MTI2NTI.*_ga_YHMRKTXXVD*MTY2NjM3NDc5OS44LjEuMTY2NjM3NTEzNy4wLjAuMA">$700 million per year</a>. </p>
<p>For patients with <a href="https://www.canada.ca/en/health-canada/programs/expert-panel-immune-globulin-product-supply-related-impacts-canada/protecting-access-immune-globulins-canadians.html">immunodeficiencies, those requiring protection from diseases such as rabies or tetanus or Rh-negative pregnant patients</a>, there are no other treatment options. </p>
<h2>Opposition</h2>
<p>Meanwhile, there is still opposition to paying plasma donors. <a href="https://bloodwatch.org/">BloodWatch</a>, a not-for-profit organization, opposes paying donors for plasma or other human tissues. It is a strong proponent of a fully public blood collection system, as is the <a href="https://www.healthcoalition.ca/">Canadian Health Coalition</a>. </p>
<p>BloodWatch cites safety, profit making and potential exploitation of plasma donors as reasons to reject the Grifols deal. A hybrid system of paid and unpaid donors competes with, and compromises, Canada’s ability to become self-sufficient, it argues.</p>
<p>The Canadian Hemophilia Society’s Page disagrees.</p>
<p>“We generally do not make drugs with our public health-care system,” he says, likening fractionated plasma products to drugs. Not least, he adds, plasma collection takes up to two hours, more than twice as long as conventional blood donation. </p>
<p><em>Dr. Sandor Demeter is Fellow of the Dalla Lana Fellowship in Global Journalism</em></p><img src="https://counter.theconversation.com/content/192746/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Sandor Demeter does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>There has been a monumental policy shift in paying blood plasma donors in Canada.Sandor Demeter, Associate Professor, Community Health Sciences, Rady Faculty of Health Sciences, University of ManitobaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1906842022-09-26T13:27:19Z2022-09-26T13:27:19ZHIV treatment in South Africa: how to help people stay on ARVs when life gets in the way<figure><img src="https://images.theconversation.com/files/484889/original/file-20220915-19-ihxxy3.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Poor retention in health services is one of the most important reasons people interrupt HIV treatment. </span> <span class="attribution"><span class="source">Stephane de Sakutin/AFP via Getty Images</span></span></figcaption></figure><p>Antiretroviral therapy (ART) has turned HIV into a manageable chronic condition. When ART is working effectively, HIV cannot be transmitted. This allows people with HIV to live fuller lives without the fear of infecting others. It’s also led global HIV control efforts to focus on increasing ART coverage. The aim is to improve the health of people living with HIV, and to decrease and eventually halt the spread of the virus. </p>
<p>UNAIDS set 90-90-90 targets to measure global progress by 2020: 90% of people with HIV know their status, 90% of those with a known status are on treatment, and 90% of those on treatment are virally suppressed (a blood test result that means ART is working effectively). These targets have now been increased to 95-95-95, to be reached by <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8186775/">2030</a>.</p>
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<strong>
Read more:
<a href="https://theconversation.com/hiv-aids-and-90-90-90-what-is-it-and-why-does-it-matter-62136">HIV, AIDS and 90-90-90: what is it and why does it matter?</a>
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<p>South Africa has <a href="https://www.spotlightnsp.co.za/2022/07/26/spotlight-on-hiv-six-graphs-that-tell-the-story/">achieved</a> the first 90 target but it <a href="https://www.thembisa.org/content/downloadPage/Thembisa4_5report">falls short</a> on the second 90.
Despite having more than <a href="https://www.unaids.org/en/regionscountries/countries/southafrica">5.5 million people</a> on treatment, only 75% of those with a known status are on ART. </p>
<p>Poor retention in health services is one of the most important reasons for this. People living with HIV need to be on ART for their whole lives. This is a tough ask, and although the pills are available free of charge in public health institutions, many people <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8186775">interrupt treatment</a>. Modelling and programme <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(22)00310-2/fulltext">data</a> <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(22)00327-8/fulltext?dgcid=raven_jbs_etoc_email#articleInformation">suggest</a> that the number of people re-initiating ART is as high as, or higher than, the number of people starting treatment for the first time. </p>
<p>Interrupting treatment is a problem for two reasons. First, people who aren’t on treatment are likely to become sick and die. Second, without consistent treatment HIV can be transmitted, leading to additional infections. </p>
<p>At <a href="https://www.anovahealth.co.za/">Anova Health Institute</a> we support the Department of Health in providing HIV services in five districts of South Africa. In a <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0256540">recent study</a>, we wanted to know more about why people with HIV interrupt and return to treatment, and how we can support them to stay in care. </p>
<h2>Reasons for stopping treatment</h2>
<p>We surveyed 562 and interviewed 30 people returning to care after interrupting ART in three provinces in South Africa. We also explored service provider challenges in providing treatment and care.</p>
<p>Our <a href="https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0256540">analysis</a> showed that retention in care is influenced by multiple factors. These include individual, family, societal and healthcare service barriers. </p>
<p>Mobility or relocation was the most common reason for treatment interruption, reported by close to a third of respondents. It was followed by ART-related factors, including side effects, and feeling too sick to continue ART (15% of respondents); and time limitations due to work (10%). Participants who move around a lot said managing their ART was difficult because of administrative hurdles.</p>
<p><a href="https://www.tandfonline.com/doi/full/10.1080/16549716.2021.2012019">Health service barriers</a> included negative service provider attitudes and providers insisting on transfer letters, which led to interruption of treatment and care. Feedback sessions conducted with 99 healthcare providers revealed that people returning to care were sometimes sent to the back of the queue or turned away if they did not have transfer letters. Both these practices are discouraged in national guidelines. Most providers <a href="https://www.tandfonline.com/doi/full/10.1080/16549716.2021.2012019">reported</a> they had seen or heard other providers act poorly towards recipients of care after interrupting ART. The poor behaviours and attitudes of providers were partly attributed to limited resources and work overload.</p>
<p>On the other hand, we <a href="https://www.tandfonline.com/doi/full/10.1080/16549716.2021.2012019">found</a> that clinics which had flexible and extended hours services were better able to keep people in care. This shows that health services need to be more responsive to different life circumstances.</p>
<h2>What must be done</h2>
<p>Health systems should be set up to allow people to change where they pick up their drugs. <a href="https://journals.sagepub.com/doi/full/10.1177/11786329211073386">Movement between provinces</a> is common in South Africa. Health services need to be more responsive to people moving within and between districts and provinces, as well as outside South Africa. A functional health information system is needed to link medical records and allow movement between clinics or drug pick-up points anywhere in the country. Healthcare providers should not insist on transfer letters. <a href="https://www.knowledgehub.org.za/elibrary/adherence-guidelines-hiv-tb-and-ncds-standard-operating-procedures-2020">The official policy</a> requires people to be assisted without a transfer letter, in practice many are turned away. Improved treatment literacy would also empower people to understand their own treatment and demand access to care.</p>
<p>ART and other services relating to HIV and other chronic diseases can be provided in <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(22)00327-8/fulltext?dgcid=raven_jbs_etoc_email#articleInformation">many ways</a> inside and outside <a href="https://journals.sagepub.com/doi/full/10.1177/11786329211073386">health facilities</a>. In South Africa, ART and chronic medication can be provided through the <a href="https://www.health.gov.za/wp-content/uploads/2021/09/ccmdd-dablab-AnQ.pdf">Dablapmeds programme</a>. This allows people to collect three months’ medication at pick-up points closer to home or work. Models like this should be supported and strengthened.</p>
<p>People with HIV <a href="https://ritshidze.org.za/wp-content/uploads/2022/03/Peoples-COP22-South-Africa.pdf">told the Department of Health</a> they wanted prescriptions for 12 months, and ART refills of three to six months. A 12-month prescription was used during COVID-19 as an emergency measure, and Anova’s programmes reported no decrease in viral suppression. This policy should be expanded. </p>
<p>Healthcare providers need improved working conditions and support to improve their ability to provide empathetic, quality services. Overall, the country needs more patient-centred and responsive health services to improve retention on ART.</p>
<p>People on ART need <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-022-00722-x">comprehensive support</a> that covers medication-related issues, psychosocial support and socioeconomic support. Proactive strategies could include check-in phone calls or messages, appointment reminders, and pop-up sites to collect treatment in remote communities, and after-hours facilities. Task shifting allows different forms of treatment support to be offered and can promote <a href="https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(22)00327-8/fulltext?dgcid=raven_jbs_etoc_email#articleInformation">ART adherence</a>.</p>
<h2>Why this matters</h2>
<p>Supporting people living with HIV to stay on treatment is the biggest challenge currently facing South African HIV services. </p>
<p>The needs and views of people with HIV must be heard and considered to protect and build on the health gains from the country’s antiretroviral programme. </p>
<p>Services that are flexible and take into account people’s changing life circumstances will improve health and decrease HIV transmission.</p><img src="https://counter.theconversation.com/content/190684/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Melanie Bisnauth is employed at the Anova Health Institute, a South African-based NGO, that receives funding from the President's Emergency Plan for AIDS Relief (PEPFAR) through USAID. Some of the work discussed in this article was funded through this grant.</span></em></p><p class="fine-print"><em><span>Kate Rees is employed at the Anova Health Institute, a South African-based NGO, that receives funding from the President's Emergency Plan for AIDS Relief (PEPFAR) through USAID. Some of the work discussed in this article was funded through this grant.</span></em></p><p class="fine-print"><em><span>Cathrine Chinyandura is employed at the Anova Health Institute, a South African-based NGO, that receives funding from the President's Emergency Plan for AIDS Relief (PEPFAR) through USAID. Some of the work discussed in this article was funded through this grant.</span></em></p>When antiretroviral therapy is working effectively, HIV cannot be transmitted. This allows people with HIV to live fuller lives without the fear of infecting others.Melanie Bisnauth, Public Health Technical Advisor, Anova Health Institute and Doctoral Researcher, School of Public Health, University of the WitwatersrandKate Rees, Public Health Medicine Specialist, University of the WitwatersrandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1898672022-09-23T12:34:56Z2022-09-23T12:34:56ZHIV therapies currently need to be taken regularly for life – longer-lasting antibody treatments could one day offer an equally effective one-shot alternative<figure><img src="https://images.theconversation.com/files/485987/original/file-20220921-15282-mal6o3.jpg?ixlib=rb-1.1.0&rect=3%2C0%2C2236%2C1333&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Broadly neutralizing antibodies are able to recognize multiple strains of HIV at once.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/monoclonal-antibody-is-an-antibody-made-by-cloning-royalty-free-image/1302640944">Naeblys/iStock via Getty Images Plus</a></span></figcaption></figure><p><a href="https://www.verywellhealth.com/antiretroviral-therapy-5216107">Antiretroviral therapy</a> has had an enormous impact on treating HIV infections around the world. The <a href="https://www.unaids.org/en/resources/fact-sheet">millions of people</a> currently taking these treatments under medical supervision can reasonably expect to reduce their viral loads to <a href="https://www.niaid.nih.gov/diseases-conditions/treatment-prevention">undetectable levels</a>, eliminate the risk of transmission and live a normal life span. However, antiretroviral therapy is not without shortcomings. People need to take these medications regularly for life, and <a href="https://doi.org/10.1038%2Fs41598-018-21081-x">low compliance</a> can lead to drug resistance.</p>
<p>There is a promising new option on the horizon. I am a <a href="https://scholar.google.com/citations?user=LyV-cJVvSncC&hl=en">researcher who studies AIDS treatments</a>, and I believe that <a href="https://my.clevelandclinic.org/health/treatments/22246-monoclonal-antibodies">monoclonal antibodies</a> could become game-changers for the treatment of HIV infections.</p>
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<figcaption><span class="caption">HIV poses a challenge to the immune system.</span></figcaption>
</figure>
<h2>HIV presents challenges to antibodies</h2>
<p><a href="https://my.clevelandclinic.org/health/body/22971-antibodies">Antibodies</a> are proteins that serve as major players in the immune system’s response to pathogens, which cause disease, and allergens, which cause allergic reactions. Antibodies recognize specific markers, or antigens, on a potentially harmful substance and help the body eliminate it.</p>
<p>Over the past few decades, researchers have been able to isolate individual antibodies specific to the individual pathogen or allergen they are meant to attack. With this advance, <a href="https://my.clevelandclinic.org/health/treatments/22246-monoclonal-antibodies">monoclonal antibodies</a> made in the lab have become a <a href="https://www.pharmavoice.com/news/2018-09-biologics/612566/">major segment of the pharmaceutical industry</a>. You can see numerous ads on TV or in magazines promoting monoclonal antibodies to treat osteoporosis, autoimmune disorders and various types of cancers.</p>
<p>Antibodies can also be used to treat viral infections, including <a href="https://combatcovid.hhs.gov/what-are-monoclonal-antibodies">COVID-19</a>. But using antibodies gets more complicated with HIV, the virus that causes AIDS in people.</p>
<p>One reason is that HIV has an <a href="https://doi.org/10.1093/bmb/58.1.19">enormous number of variants</a> circulating across the world and even within a single infected individual. In fact, the genetic variation of HIV within a single patient exceeds the genetic variation of all circulating influenza strains worldwide during an entire flu season.</p>
<p>The immune system of an individual infected with HIV creates antibodies to neutralize the virus. However, because these antibodies can usually recognize only one particular strain, they are unable to neutralize other HIV strains circulating in the population. Furthermore, HIV can <a href="https://doi.org/10.1073%2Fpnas.0630530100">mutate within an infected individual</a> and escape antibodies specific to the variant causing the original infection.</p>
<p>This ability to mutate and escape ongoing immune responses is a critical factor in the virus’s ability to continuously replicate, a hallmark of AIDS. It also makes it difficult to design an antibody treatment that can account for HIV’s enormous genetic variability.</p>
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<figcaption><span class="caption">Monoclonal antibodies are used to treat many types of cancer.</span></figcaption>
</figure>
<h2>Broadly neutralizing antibodies show promise</h2>
<p>The discovery of rare individuals who make anti-HIV antibodies that can be effective against <a href="https://doi.org/10.1186/s12977-018-0453-y">up to 80% of circulating strains</a>, however, has boosted prospects for antibody treatments for HIV.</p>
<p>These <a href="https://doi.org/10.1080%2F22221751.2020.1713707">broadly neutralizing antibodies</a>, or bnAbs, have seen impressive results. <a href="https://doi.org/10.1038/s41591-018-0001-2">Monkey</a> <a href="https://doi.org/10.1073%2Fpnas.1214785109">studies</a> have found that a single administration of bnAbs can prevent infection from SHIV, the nonhuman primate version of HIV. One study found that <a href="https://doi.org/10.1038/nature12744">two broadly neutralizing antibodies</a> were able to reduce viral loads to undetectable levels in infected monkeys.</p>
<p>In people, one study administering <a href="https://doi.org/10.1038/s41586-018-0531-2">two bnAbs</a> also saw suppression of HIV replication and nearly undetectable viral loads. One <a href="https://doi.org/10.1056/NEJMoa2031738">early-phase clinical trial</a> in 2021 showed that one bnAb could potentially offer protection against HIV infection.</p>
<h2>Long-term production of antibodies</h2>
<p>All the monkey and human studies mentioned above required re-administering the broadly neutralizing antibodies every three weeks or so to maintain effective concentrations. This runs into the same problem antiretroviral therapies face in terms of requiring the individual to retake the drug frequently for life. But researchers have found a potential solution.</p>
<p>Using a small virus that doesn’t cause disease, called an <a href="https://doi.org/10.1038/s41591-022-01762-x">adeno-associated virus</a>, to deliver broadly neutralizing antibodies into the body can stimulate muscle cells to continually produce these antibodies. Because muscle cells have a <a href="https://education.seattlepi.com/average-life-span-skeletal-muscle-cells-6414.html">prolonged life span</a> and can last on average 10 to 16 years, they can be turned into factories that produce the antibodies essentially for life. </p>
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<figcaption><span class="caption">Broadly neutralizing antibodies can target many HIV strains circulating around the world.</span></figcaption>
</figure>
<p>One study my colleagues and I conducted using adeno-associated virus found that one monkey was able to produce these antibodies for <a href="https://doi.org/10.3389%2Ffimmu.2020.00449">over six years</a> after a single injection. </p>
<p>Another monkey that researchers dubbed the “<a href="https://doi.org/10.1016/j.immuni.2019.02.010">The Miami Monkey</a>” is considered functionally cured, meaning its viral loads have been at undetectable levels for prolonged periods even without continuous antiviral drug therapy. <a href="https://doi.org/10.1016/j.immuni.2019.02.005">Two other monkeys</a> have also been cured of their AIDS virus infections with this approach.</p>
<p>Adeno-associated virus vectors for HIV antibody therapies still face one more hurdle: <a href="https://doi.org/10.1016/S2352-3018(19)30003-7">anti-drug antibodies</a>, or antibodies the body produces in response to the antibodies in the treatment. Anti-drug antibodies can result when the body registers an antibody treatment as foreign and mounts an immune response against it, negating the treatment. They have also have caused problems for antibody treatments in <a href="https://doi.org/10.1634%2Ftheoncologist.2016-0061">cancer</a> and <a href="https://www.uptodate.com/contents/tumor-necrosis-factor-alpha-inhibitors-induction-of-antibodies-autoantibodies-and-autoimmune-diseases">autoimmune disorders</a>. That may especially be the case for broadly neutralizing antibodies, which have unusual structures that deviate from what the body normally expects an antibody to look like.</p>
<p>Researchers are working hard to develop simple and accessible approaches to help patients build tolerance to broadly neutralizing antibodies. Some of these approaches include delivering treatments to other areas that have greater immune tolerance than the muscle, such as <a href="https://doi.org/10.1016%2Fj.omtm.2019.11.010">to the liver</a> and <a href="https://doi.org/10.1007%2Fs12016-018-8680-5">through the mouth</a>.</p>
<p>Stay tuned.</p><img src="https://counter.theconversation.com/content/189867/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ronald C. Desrosiers receives funding from the National Instituyes of Health. He receives no corporate/commercial/company support.</span></em></p>Antiretroviral therapies for HIV, while extremely effective, need to be taken daily for life. Designing antibody treatments that need to be taken only once could improve compliance and reduce drug resistance.Ronald C. Desrosiers, Professor of Pathology, Vice-chair for Research, University of MiamiLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1896192022-09-22T12:40:05Z2022-09-22T12:40:05Z‘Men who have sex with men’ originated during the HIV pandemic to focus on behavior rather than identity – but not everyone thinks the term helps<figure><img src="https://images.theconversation.com/files/485710/original/file-20220920-14360-lngmmg.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C2121%2C1412&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The monkeypox pandemic has seen an increase in the use of the term "men who have sex with men."</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/rear-view-of-gay-couple-on-lookout-above-the-city-royalty-free-image/1195433903">Westend61/Getty Images</a></span></figcaption></figure><p>Since the <a href="https://www.npr.org/2022/08/05/1116036167/talking-about-monkeypox-effectively-without-stigmatizing-men-who-have-sex-with-m">global monkeypox outbreak</a> started to spread this past spring, more people are seeing the term “men who have sex with men,” or MSM, in the news and public health messages. You may have also heard this term in places like HIV prevention campaigns or at the doctor’s office.</p>
<p>I am a <a href="https://cph.osu.edu/people/jricks">behavioral scientist</a> who focuses on reducing health disparities and improving health equity for sexual and gender minority populations at highest risk for poor outcomes. At the most basic level, <a href="https://doi.org/10.1080/00224499009551551">men who have sex with men</a> is a term that was originally intended to describe the risk of HIV transmission associated with sex between two men. But in reality, MSM describes a diverse group of behaviors and identities, bringing with it a complex web of social, political and cultural considerations about how it’s used.</p>
<h2>Why use MSM?</h2>
<p>HIV researchers have used the term “men who have sex with men” <a href="https://doi.org/10.1007/BF01326525">since at least 1988</a> as a way to describe a particular type of sexual behavior that may affect health.</p>
<p>The acronym MSM, however, was <a href="https://doi.org/10.1902/jop.1994.65.5.393">introduced in 1994 as a new concept</a> by some researchers and community advocates in response to public health research and prevention efforts early in the HIV/AIDS pandemic. These efforts almost exclusively targeted men based on their sexual identity as gay. Community advocates <a href="https://prideindex.com/in-touch-with-cleo-manago/">criticized this approach</a> for excluding Black and Latino men who have sex with men who were affected by the pandemic but did not identify as gay, homosexual or bisexual. MSM was considered to be a more inclusive, less stigmatizing term that could be used to reach a broader range of people.</p>
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<a href="https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Demonstrators holding signs protesting against AIDS discrimination" src="https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=839&fit=crop&dpr=1 600w, https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=839&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=839&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1055&fit=crop&dpr=1 754w, https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1055&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/485707/original/file-20220920-11202-cf9dvv.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1055&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">During the AIDS epidemic, new terminology arose to focus research and public health interventions on behavior rather than identity.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/AIDSDiscriminationProtest/96ceaffa64224626b88eae3bd88e7503">AP Photo/Rick Maiman</a></span>
</figcaption>
</figure>
<p>From a scientific perspective, using an identity-free term like MSM allows medical providers and public health practitioners to bypass the complexities of the social, cultural and political context of sexual orientation. Instead, they can then focus on the behavior that might put someone at risk for an infection such as HIV or monkeypox. This approach is <a href="https://pubmed.ncbi.nlm.nih.gov/16080458/">intended to help</a> increase the likelihood of screening, diagnosing and treating those at the greatest risk.</p>
<p>Prevention strategies that target people based on “what you do” rather than “who you are” reach more people who may be affected by a public health concern, including heterosexual men who have sex with men, rather than limiting outreach just to those who identify as gay or bisexual. They offer a larger number of men the opportunity to understand their risk and take the steps necessary for protection or treatment. They also help <a href="https://doi.org/10.2105/AJPH.2004.046714">decrease stigma</a> for those who identify as gay or bisexual.</p>
<h2>Limitations of MSM</h2>
<p>Despite its usefulness in some contexts, the term MSM has been hotly debated by scholars and community advocates since it was coined. <a href="https://doi.org/10.2105/AJPH.2004.046714">Disagreement</a> <a href="https://doi.org/10.2105/AJPH.2020.305870">on its use</a> is usually grounded in three arguments.</p>
<p>The first is that the term is ambiguous. Some researchers argue that distilling MSM down to “sex between two men” is too simplistic. For one, there are a number of nuances and factors that <a href="https://www.cdc.gov/hiv/group/msm/msm-content/prevention-challenges.html">influence the amount of risk</a> associated with sex between two men, such as how sex is performed and who and how many partners are in their sexual network. There is also confusion about how frequently or recently someone must have sex in order to be considered MSM. And there is <a href="https://doi.org/10.7448/IAS.19.3.20779">no consensus</a> about whether transgender men who have sex with men should be considered MSM. </p>
<p>The second critique is that the term <a href="https://doi.org/10.2105/AJPH.2004.046714">undermines the identities</a> of sexual minority group members, particularly people of color. Many public health researchers use MSM as a neutral term to push back against the idea that there is only one legitimate gay identity. However, some have criticized the term for erasing other sexual identities such as queer, two-spirited and same-gender loving by being the default term used in research, despite participants describing themselves as otherwise.</p>
<figure>
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<figcaption><span class="caption">While HIV cases are largely decreasing across the U.S., high infection rates remain in Southern states.</span></figcaption>
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<p>Finally, the third argument is that the term conceals the social, political and cultural dimensions of health important for public health research and intervention. One of the greatest advantages of MSM is that it is grounded in tangible behaviors that researchers can target for health promotion and prevention efforts. But sexual health is influenced by a constellation of factors, and focusing on behavior alone is often not enough to completely protect against illness. </p>
<p>Beyond sexual behavior, <a href="https://doi.org/10.17226/25877">discrimination and social marginalization</a> put sexual minorities at significant risk of poor health outcomes. These can take the form of structural factors, such as anti-gay legislation, and community factors, such as discrimination and stigma. Interpersonal factors like relationship abuse and individual factors like internalized stigma also play a role. These factors <a href="https://doi.org/10.1016/j.mhp.2016.10.002">increase the risk of mental illness</a>, such as depression and suicidal thoughts, as well as risky health behaviors, such as sex without a condom or while under the influence of drugs.</p>
<p>Almost 30 years since it was introduced, the term MSM is becoming increasingly ubiquitous in both medical and public health spaces. But it does have limitations. Considering the sociopolitical context of whether MSM should be used, rather than using it by default, can help support the self-determination of those who belong to historically marginalized communities.</p><img src="https://counter.theconversation.com/content/189619/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>JaNelle Ricks does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The term ‘MSM’ allows public health interventions to gloss over the social, political and cultural complexities of identity. But it’s not without its limitations.JaNelle Ricks, Assistant Professor of Health Behavior and Health Promotion, The Ohio State UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1903172022-09-13T12:33:27Z2022-09-13T12:33:27ZFree preventive care under the ACA is under threat again – a ruling exempting PrEP from insurance coverage may extend nationwide and to other health services<figure><img src="https://images.theconversation.com/files/484101/original/file-20220912-5769-hqsuwm.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1024%2C683&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">PrEP is almost 100% effective in preventing HIV infection when taken as directed.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/thembelani-sibanda-shows-the-pre-exposure-prophylaxis-an-news-photo/888296568">The Times/Gallo Images via Getty Images Editorial</a></span></figcaption></figure><p>Many Americans breathed a sigh of relief when the Supreme Court left the Affordable Care Act in place following the law’s <a href="https://www.supremecourt.gov/opinions/20pdf/19-840_6jfm.pdf">third major legal challenge</a> in June 2021. This decision left <a href="https://source.wustl.edu/2017/02/americans-divided-on-obamacare-repeal-poll-finds/">widely supported policies</a> in place, like ensuring coverage <a href="https://www.healthcare.gov/coverage/pre-existing-conditions/">regardless of preexisting conditions</a>, coverage for <a href="https://www.healthcare.gov/young-adults/children-under-26/">dependents up to age 26</a> on their parents’ plan, and removal of <a href="https://www.healthcare.gov/health-care-law-protections/lifetime-and-yearly-limits/">annual and lifetime benefit limits</a>.</p>
<p>But the hits keep coming. One of the most popular benefits offered by the ACA, <a href="https://www.kff.org/health-reform/fact-sheet/preventive-services-covered-by-private-health-plans/">free preventive care</a>, is under legal threat again by <a href="https://www.vox.com/policy-and-politics/2022/9/7/23341076/obamacare-reed-oconnor-prep-supreme-court-braidwood-becerra-affordable-care-act">Braidwood Management v. Becerra</a> – originally Kelley v. Becerra. The Braidwood plaintiffs are a mix of individuals and business owners who object to purchasing insurance that covers preexposure prophylaxis – or PrEP – a medicine that is <a href="https://www.cdc.gov/hiv/basics/prep/prep-effectiveness.html">almost 100% effective</a> in preventing HIV infection. One of the plaintiffs claimed that PrEP “facilitates and encourages homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman” and that his religious beliefs prevent him from providing insurance that covers PrEP.</p>
<p>On Sep. 7, 2022, Texas Judge Reed O’Connor issued a <a href="https://affordablecareactlitigation.files.wordpress.com/2022/09/gov.uscourts.txnd_.330381.92.0_1.pdf">ruling</a> that the requirement for insurance plans to cover PrEP violated the religious freedom of the plaintiffs. He also ruled that the ACA overstepped in delegating decisions about cost-sharing for preventive care to the U.S. Preventive Services Task Force. Who this ruling will ultimately affect and whether it will eventually get rid of the requirement to fully cover other preventive care, like free flu shots and cancer screening, has <a href="https://www.healthaffairs.org/content/forefront/court-holds-key-aca-preventive-services-requirements-unconstitutional">yet to be confirmed</a>.</p>
<p>We are public health researchers at <a href="https://www.bu.edu/sph/profile/paul-shafer/">Boston University</a> and <a href="https://sph.tulane.edu/sbps/kristefer-stojanovski-phd-mph">Tulane University</a> who study health insurance, prevention and sexual health. With this policy now in jeopardy, prevention and the push for health equity in the U.S. stand to take a big step backward.</p>
<h2>The ACA and preventive care</h2>
<p><a href="https://www.law.cornell.edu/cfr/text/29/2590.715-2713">Section 2713</a> of the ACA requires insurers to offer <a href="https://www.healthcare.gov/coverage/preventive-care-benefits/">full coverage of preventive services</a> that are endorsed by one of three federal groups: the U.S. Preventive Services Task Force (with an A or B rating), the Advisory Committee on Immunization Practices and the Health Resources and Services Administration. If they recommend the procedure or intervention as important preventive care, then you shouldn’t have to pay anything out of pocket. For example, <a href="https://www.congress.gov/bill/116th-congress/house-bill/748/">the CARES Act</a> used this provision to ensure COVID-19 vaccines would be free for many Americans.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Healthcare provider examining child in exam room." src="https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/418993/original/file-20210901-13-wnh1xo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">The Affordable Care Act significantly reduced the costs of well-child visits since it was instated.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/girl-having-checkup-in-doctors-office-royalty-free-image/153337724">John Fedele/The Image Bank via Getty Images</a></span>
</figcaption>
</figure>
<p>PrEP received an <a href="https://www.uspreventiveservicestaskforce.org/uspstf/recommendation/prevention-of-human-immunodeficiency-virus-hiv-infection-pre-exposure-prophylaxis">A rating</a> in June 2019, paving the way for both PrEP and related services like clinic visits and lab tests to be covered at no cost for millions of people. </p>
<p>Though Section 2713 of the ACA <a href="https://doi.org/10.1016/j.ypmed.2021.106690">doesn’t work perfectly</a>, sometimes leaving patients frustrated by <a href="https://www.washingtonpost.com/national/health-science/getting-charged-for-free-preventive-care/2014/01/17/98fbd1fa-7ec2-11e3-95c6-0a7aa80874bc_story.html">unexpected bills</a>, it has made a huge difference in reducing costs for services like <a href="https://doi.org/10.1001/jamanetworkopen.2021.1248">well-child visits</a> and <a href="https://doi.org/10.1097/MLR.0000000000000610">mammograms</a>, just to name a few.</p>
<h2>The legal arguments</h2>
<p>The latest case rested on <a href="https://theconversation.com/the-next-attack-on-the-affordable-care-act-may-cost-you-free-preventive-health-care-166087">legal technicalities</a> that have nothing to do with PrEP, but rather whether the U.S. Preventive Services Task Force can wield the authority granted to them by the ACA, and whether the religious freedom of the plaintiffs was violated.</p>
<p>O’Connor <a href="https://www.healthaffairs.org/content/forefront/court-holds-key-aca-preventive-services-requirements-unconstitutional">agreed</a> that allowing the U.S. Preventive Services Task Force this authority violated the <a href="https://www.law.cornell.edu/constitution/articleii">appointments clause</a> of the Constitution, which specifies that people using government powers must be “officers of the United States.” In this case, O'Connor ruled that U.S. Preventive Services Task Force members do qualify as officers, but their appointment is unconstitutional because they are not appointed by the President and confirmed by the Senate.</p>
<p>This paves the way for the repeal of Section 2713 and allowing insurers to decide what, if any, preventive care would remain free to patients in their plans. He also argued that because the ACA “force[s] Braidwood to [cover] services to which it holds sincere religious objections … offering coverage is itself a tacit endorsement of the behaviors that [the plaintiff] believes the services encourage.”</p>
<h2>Losing access to preventive care</h2>
<p>PrEP is a major component of the prevention pillar of the United States’ “<a href="https://www.cdc.gov/endhiv/about.html">Ending the HIV Epidemic</a>” initiative and has <a href="https://www.aidsmap.com/news/sep-2019/prep-reducing-hiv-diagnoses-us-cities-independently-effect-treatment">successfully reduced HIV diagnosis rates</a> in areas where it is highly used. If this ruling were to extend nationally, over <a href="https://dx.doi.org/10.1016%2Fj.annepidem.2018.06.009">170,000 current PrEP users</a> and <a href="https://doi.org/10.1016/j.annepidem.2018.05.003">over 1 million people</a> who can benefit from this medicine could be affected.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Red ribbon hanging from the North Portico of the White House" src="https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=408&fit=crop&dpr=1 600w, https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=408&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=408&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=512&fit=crop&dpr=1 754w, https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=512&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/434528/original/file-20211129-19-1jm1jvh.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=512&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">PrEP is a key tool to helping the U.S. reach its goal of substantially reducing new HIV infections by 2030.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/ObamaWorldAidsDay/c146dee7e944420482f3e5786d4d2e50">AP Photo/Pablo Martinez Monsivais</a></span>
</figcaption>
</figure>
<p>Removing the cost barrier to PrEP made it more accessible with commercial insurance, the primary source of health coverage for <a href="https://www.cdc.gov/nchs/data/nhis/earlyrelease/insur202108-508.pdf">over two-thirds of the population</a> under age 65. Raising the cost barrier again would <a href="https://doi.org/10.1001/jamanetworkopen.2021.22692">disproportionately harm</a> younger patients, people of color and those with lower incomes. Black men who have sex with men could be particularly affected because of the structural barriers they face, despite having <a href="https://doi.org/10.1016/S0140-6736(12)60899-X">no more “risky” sexual behavior</a> on average than other men who have sex with men.</p>
<h2>What’s next?</h2>
<p>For now, the religious freedom portion of the ruling is specific to PrEP and Braidwood Management’s purchase of plans that cover PrEP. It is unclear whether the order will apply only to these plaintiffs or nationwide. </p>
<p>The next filings, where both sides will begin to provide more information on how they believe the ruling should be applied, are due by <a href="https://storage.courtlistener.com/recap/gov.uscourts.txnd.330381/gov.uscourts.txnd.330381.94.0_1.pdf">Sept. 16, 2022</a>. As of yet, there is no timeline for a concrete decision.</p>
<p>For the time being, access to PrEP, contraception, cancer screenings and all other forms of preventive care made free by the ACA continue to be available. Regardless of O’Connor’s final decision, this case seems likely to be appealed to the Supreme Court, where another showdown over the fate of a substantial part of the ACA will be decided.</p>
<p><em>Portions of this article originally appeared in previous articles published on <a href="https://theconversation.com/the-next-attack-on-the-affordable-care-act-may-cost-you-free-preventive-health-care-166087">Sep. 7, 2021</a> and <a href="https://theconversation.com/hiv-prevention-pill-prep-is-now-free-under-most-insurance-plans-but-the-latest-challenge-to-the-affordable-care-act-puts-this-benefit-at-risk-171086">Dec. 1, 2021</a>.</em></p><img src="https://counter.theconversation.com/content/190317/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Shafer has received funding in the past three years from the Commonwealth Fund, Arnold Ventures, Robert Wood Johnson Foundation, Kate B. Reynolds Charitable Trust, Starbucks Coffee Company, and Renova Health.</span></em></p><p class="fine-print"><em><span>Kristefer Stojanovski has received funding in the past from the Robert Wood Johnson Foundation, the National Institute of Minority Health & Health Disparities, the National Institute of Mental Health, and the Fulbright Program</span></em></p>Judge Reed O'Connor ruled in a case that coverage for HIV prevention medicine PrEP violated the religious freedom of the plaintiffs. It is unclear whether the order will extend nationwide.Paul Shafer, Assistant Professor of Health Law, Policy and Management, Boston UniversityKristefer Stojanovski, Research Assistant Professor of Social, Behavioral and Population Sciences, Tulane UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1879682022-08-24T12:25:42Z2022-08-24T12:25:42ZMisinformation is a common thread between the COVID-19 and HIV/AIDS pandemics – with deadly consequences<figure><img src="https://images.theconversation.com/files/480653/original/file-20220823-13-9i4k47.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3000%2C1998&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Disinformation can derail public health measures vital to controlling the spread of infectious disease.</span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/VirusOutbreakStubbornMisinformation/6fa082481b454a1d8fc381840890d2ee">AP Photo/Jeff Chiu</a></span></figcaption></figure><p>Since health officials confirmed the first COVID-19 cases, <a href="https://apnews.com/article/coronavirus-pandemic-misinformation-health-433991ea434e12ccfdf97b5db415310d">misinformation</a> has spread just as quickly as the virus. <a href="https://theconversation.com/big-tech-has-a-vaccine-misinformation-problem-heres-what-a-social-media-expert-recommends-164987">Social media</a> may have made the amount, variety and speed of misinformation seem unprecedented, but COVID-19 isn’t the first pandemic where false and harmful information has set back public health. </p>
<p>Misinformation altered how people trusted their governments and doctors during the <a href="https://www.publicaffairsbooks.com/titles/laura-spinney/pale-rider/9781610397681/">1918 influenza pandemic</a>. It fueled the <a href="https://theconversation.com/covid-19-anti-vaxxers-use-the-same-arguments-from-135-years-ago-145592">19th century smallpox anti-vaccine movements</a> through some of the same arguments as those currently used against the COVID-19 vaccine.</p>
<p>What sets the COVID-19 pandemic apart, however, is the sheer magnitude of damaging disinformation put in circulation around the world. Data shows that regions and countries where disinformation thrived experienced more lethal pandemic waves despite vaccine availability. In the U.S., for example, <a href="https://bfi.uchicago.edu/working-paper/2020-44/">viewership of a Fox News program</a> that downplayed the pandemic is associated with increased COVID-19 cases and deaths. Similarly <a href="https://doi.org/10.3389%2Ffpubh.2021.813941">in Romania</a>, disinformation is a contributing factor to the country’s <a href="https://www.cnn.com/2021/11/22/europe/romania-covid-19-vaccine-skepticism-intl-cmd/index.html">disastrous fourth wave</a> of COVID-19.</p>
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<figcaption><span class="caption">The COVID-19 infodemic began as soon as the first few cases of infections were confirmed.</span></figcaption>
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<p>The problem of misinformation has been so widespread that it has its own word: “<a href="https://www.merriam-webster.com/words-at-play/words-were-watching-infodemic-meaning">infodemic</a>,” a portmanteau of “information” and “epidemic.” Coined by journalist David Rothkopf during the <a href="https://www.proquest.com/docview/279705520">2003 SARS outbreak</a>, it describes a situation where “a few facts, mixed with fear, speculation and rumor, are amplified and relayed swiftly worldwide by modern information technologies.” </p>
<p>Infodemics can affect economies, politics, national security and public health. The COVID-19 infodemic became such a problem that <a href="https://royalsociety.org/-/media/policy/projects/set-c/set-c-vaccine-deployment.pdf">the Royal Society and the British Academy</a> released an October 2020 report noting its significant impact on vaccine deployment, endorsing legislation that prosecutes those who spread misinformation.</p>
<p>As a <a href="http://www.pmi.pitt.edu/person/cristian-apetrei-md-phd">researcher who studies HIV</a> and lived through the AIDS pandemic, I felt a sense of déjà vu as COVID-19 disinformation spread. In the 40 years since the emergence of AIDS, society has learned how to cope with the disease with more effective <a href="https://doi.org/10.1128/CVI.00053-16">diagnostics</a>, <a href="https://doi.org/10.1016/B978-0-12-405880-4.00003-2">treatments</a> and <a href="https://www.niaid.nih.gov/diseases-conditions/pre-exposure-prophylaxis-prep">preventive strategies</a>, transforming AIDS from a lethal condition to a <a href="https://doi.org/10.1016/S0140-6736(13)61809-7">chronic disease</a>. </p>
<p>However, there are <a href="https://doi.org/10.1016/j.tim.2022.07.004">striking parallels between the HIV/AIDS and COVID-19 pandemics</a> that show the dire consequences disinformation can have on both patients and society as a whole. </p>
<h2>Denying the existence of a virus or a pandemic</h2>
<p>There are people who <a href="https://www.theguardian.com/commentisfree/2021/oct/18/its-bizarre-to-see-a-covid-patient-deny-covid-exists-while-gasping-for-breath">deny the</a> <a href="https://www.cnn.com/2020/12/08/health/us-coronavirus-tuesday/index.html">existence of COVID-19</a>. There are <a href="https://www.reuters.com/article/factcheck-covid-rna/fact-check-sars-cov-2-has-been-isolated-and-its-complete-genome-has-been-sequenced-idUSL1N2LS27P">abundant claims</a> on social media that the virus that causes COVID-19 has never been isolated, or it is insufficiently characterized. Others do not contest the existence of COVID-19, but <a href="https://www.reuters.com/article/uk-factcheck-coronavirus-common-cold-idUSKBN2142MC">ignore the severe consequences of infection</a>. </p>
<p>In general, these groups tend to also <a href="https://theconversation.com/germ-theory-denialism-is-alive-and-well-and-taking-the-nuance-out-of-scientific-debate-163408">deny germ theory</a>, claiming that infectious diseases are not caused by pathogens like viruses and bacteria. Instead, they <a href="https://www.popsci.com/health/germ-theory-terrain-theory/">promote the idea</a> that pathogens don’t cause disease, but rather are a consequence of it.</p>
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<figcaption><span class="caption">Misinformation is just one common theme between the COVID-19 and HIV/AIDS pandemics.</span></figcaption>
</figure>
<p>Likewise, some denied the role of the HIV virus in AIDS infection. AIDS denialist Peter Duesberg was one person who disseminated this misinformation, which had been <a href="https://doi.org/10.1126/science.7992043">refuted by the scientific community at large</a>. But his erroneous claim still reached the then president of the Republic of South Africa, Thabo Mbeki, who banned the use of lifesaving antiretrovirals in public hospitals. This decision resulted in the <a href="https://www.hsph.harvard.edu/news/magazine/spr09aids/">deaths of over 330,000 people from HIV/AIDS</a> between 2000 and 2005. </p>
<p>Mbeki’s decision was considered so damaging that scientists and physicians worldwide signed the <a href="https://doi.org/10.1038/35017662">Durban Declaration</a>, reiterating that HIV indeed causes AIDS and urging Mbeki to reconsider his decision. While the government did <a href="https://www.theguardian.com/world/2006/oct/28/southafrica.aids">reverse the ban</a> after strong international political pressure, the damage had been done.</p>
<h2>Gain of function claims</h2>
<p><a href="https://theconversation.com/why-gain-of-function-research-matters-162493">Gain of function experiments</a> involve manipulating a pathogen to understand what contributes to its ability to cause disease. At the same time, such experiments can give pathogens new abilities, such as making viruses more transmissible or more dangerous to humans. Conspiracy theorists have <a href="https://doi.org/10.1038/d41586-021-02903-x">made claims</a> that the COVID-19 virus resulted from alterations to a bat version of the virus that gave it the ability to replicate in human cells. </p>
<p>But these claims ignore several <a href="https://doi.org/10.1016%2Fj.cell.2021.08.017">key facts about the COVID-19 virus</a>, including that all coronaviruses from bats can infect humans without additional adaptation. The mutations that increased the transmissibility of COVID-19 occurred after it started circulating in people, resulting in even more infectious variants. </p>
<p>HIV also saw <a href="https://doi.org/10.1097%2F01.qai.0000209897.59384.52">conspiracy theories</a> claiming that it was created in a lab for genocide. But research has shown that HIV also naturally evolved from an animals. African non-human primates are natural hosts to a vast group of viruses collectively called <a href="https://doi.org/10.1007/s11904-009-0034-8">simian immunodeficiency viruses (SIV)</a>. Despite their high rates of SIV infection in the wild, these primate hosts typically don’t experience symptoms or progress to AIDS. Throughout the evolutionary history of SIV, <a href="https://doi.org/10.1126/science.1080657">jumping to a new host species</a> involved naturally occurring genetic changes over the course of thousands of years.</p>
<h2>Miracle cures</h2>
<p>During a public health crisis, researchers and health officials are learning about a disease in real time. While missteps are expected, these can be perceived by the public as hesitation, incompetence or failure.</p>
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<figcaption><span class="caption">There are some steps you can take to identify misinformation.</span></figcaption>
</figure>
<p>As researchers looked for possible COVID-19 treatments, others were offering their own unproven drugs. <a href="https://doi.org/10.1056/nejmoa2023184">Multiple treatments</a> for COVID-19, including ivermectin and hydroxychloroquine, were <a href="https://doi.org/10.1016%2Fj.cmi.2022.01.008">tested and abandoned</a>. But not before large amounts of time, effort and money were spent on disproving claims that these were supposed miracle treatments. <a href="https://doi.org/10.1056/NEJM200106073442306">Similarly for HIV</a>, frustration and anxiety from a continued lack of available treatments amid rising deaths led to fraudulent cures, with price tags of tens of thousands of dollars.</p>
<p>Even though treatment delays and changing guidelines are a natural process of learning about a new diseases as it unfolds, they can open the door to disinformation and generate <a href="https://www.latimes.com/opinion/story/2022-01-20/unvaccinated-covid-patients-healthcare-workers-turnover-burnout">distrust in doctors</a> even as they care for infected patients.</p>
<h2>Preventing misinfodemics</h2>
<p>The next pandemic is not a question of if but when and where it will occur. Just as important as devising ways to detect emerging viruses is developing strategies to address the misinfodemics that will follow them. The recent <a href="https://www.npr.org/sections/goatsandsoda/2022/08/05/1115859376/clearing-up-some-of-the-myths-that-have-popped-up-about-monkeypox">monkeypox outbreak</a> has already seen similar spread of mis- and disinformation about its source and spread.</p>
<p>As author <a href="https://www.worldcat.org/title/autumn-of-the-patriarch/oclc/878792383">Gabriel Garcia Marquez</a> once said, “A lie is more comfortable than doubt, more useful than love, more lasting than truth.” Countering misinformation is difficult, because there are <a href="https://doi.org/10.1038/s44159-021-00006-y">reasons other than ignorance</a> for why someone believes in a falsehood. In those cases, presenting the facts may not be enough, and may sometimes even result in someone doubling down on a false belief. But focusing on urgent scientific and medical needs to the exclusion of rapidly addressing misinformation can derail pandemic control. Strategies that take misinformation into account can help other pandemic control measures be more successful.</p><img src="https://counter.theconversation.com/content/187968/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Cristian Apetrei receives funding from the National Institutes of Health/National Institute of Diabetes and Digestive and Kidney Diseases/National Institute of Allergy and Infectious Diseases: R01 DK113919, R01 DK119936, R01 DK131476, R01 AI119346. </span></em></p>The spread of misinformation in many pandemics, including the smallpox and 1918 influenza outbreaks, have undermined efforts to contain infections and prevent deaths.Cristian Apetrei, Professor of Immunology, Infectious Diseases and Microbiology, University of PittsburghLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1871442022-07-25T18:21:46Z2022-07-25T18:21:46ZControlling monkeypox: The time for Canada to act is now<figure><img src="https://images.theconversation.com/files/475874/original/file-20220725-20-h1uyyr.JPG?ixlib=rb-1.1.0&rect=0%2C22%2C4948%2C3642&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A health-care provider administers monkeypox vaccine at an outdoor walk-in clinic in Montréal, on July 23, 2022. It is crucial that people who have been exposed to monkeypox get vaccinated if they do not yet have symptoms, or isolate if they do have symptoms.
</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Graham Hughes</span></span></figcaption></figure><p>The World Health Organization (WHO) has declared monkeypox a <a href="https://www.who.int/news/item/23-07-2022-second-meeting-of-the-international-health-regulations-(2005)-(ihr)-emergency-committee-regarding-the-multi-country-outbreak-of-monkeypox">Public Health Emergency of International Concern</a>. It’s likely that until about two months ago, many Canadians had not even heard of this disease. </p>
<p>Since May, monkeypox has been in the news everywhere, including Canada, where the <a href="https://www.canada.ca/en/public-health/services/diseases/monkeypox.html">number of infections has reached 681</a> as of July 22. It has started spreading from major cities such as Toronto and Montréal into regional centres such as Hamilton, where the <a href="https://www.cbc.ca/news/canada/hamilton/monkeypox-hamilton-1.6509823">first case</a> was publicly reported July 4.</p>
<p>The good news is this: monkeypox is still quite isolated relative to the total population. There is still time to knock it back, and there is already an <a href="https://www.health.gov.on.ca/en/pro/programs/emb/docs/Monkeypox_Vaccine_InfoSheet.pdf">effective vaccine</a> available, though <a href="https://www.ctvnews.ca/health/canada-s-top-doctor-says-talks-underway-to-obtain-more-vaccine-to-fight-monkeypox-1.5970030">supplies are limited</a>. </p>
<p>The bad news is that the window is short — a matter of weeks, not months — to vaccinate the most susceptible and to encourage and support self-isolation for those who have symptoms. After that, monkeypox may expand beyond our capacity to control it with the vaccine supply we now have available.</p>
<p>Spurring individuals and governments to act may be challenging, though, given the degree of COVID-19 fatigue that has set in and the <a href="https://www.cbc.ca/news/canada/british-columbia/covid-misinformation-trust-public-health-1.6001767">erosion of trust in public health measures</a>, including vaccines, due to misinformation.</p>
<h2>Monkeypox</h2>
<p><a href="https://www.who.int/news-room/questions-and-answers/item/monkeypox?gclid=CjwKCAjwq5-WBhB7EiwAl-HEkkPOtlnAQsPLPVQqQjzWDx1lOrBzwD8o_r1ZQVbOUDlIcJ9VoGkGOxoCNLsQAvD_BwE">Monkeypox</a>, a close relative of smallpox, first jumped to humans in 1958. <a href="https://www.nature.com/articles/d41586-022-01686-z">It has become endemic to a group of countries in Central and West Africa</a>, but had been of little interest in other places until it also became a threat in North America and Europe. </p>
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<img alt="A hand holding a vial of monkeypox vaccine with the other hand drawing the vaccine into a syringe." src="https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=434&fit=crop&dpr=1 600w, https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=434&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=434&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=545&fit=crop&dpr=1 754w, https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=545&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/475872/original/file-20220725-12-1zz5w9.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=545&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">A health-care worker prepares a monkeypox vaccine in Montréal, on July 23, 2022.</span>
<span class="attribution"><span class="source">THE CANADIAN PRESS/Graham Hughes</span></span>
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<p>What we’re seeing right now in Canada is that monkeypox is primarily affecting <a href="https://www.who.int/news/item/25-05-2022-monkeypox--public-health-advice-for-gay--bisexual-and-other-men-who-have-sex-with-men">men who have sex with men</a>. It’s not yet time to advise everyone to rush out and get a vaccine, but it is certainly time to make sure that those who are in the most affected communities understand the risk of infection, recognize the symptoms and take steps to protect themselves and others. </p>
<p>Despite having so far affected mainly men in the 2SLGBTQ+ community, it is important to emphasize that monkeypox is not at all a “gay disease.” It is spread simply though <a href="https://www.cdc.gov/poxvirus/monkeypox/transmission.html">close personal contact</a>, which may or may not involve sexual contact. </p>
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Read more:
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<p>Given its current pattern of emergence in the 2SLGBTQ+ community, we must use the hard-earned lessons from the appearance of HIV/AIDS in the 1980s not to repeat the stigmatizing errors of that time, which were not only shameful in a social sense, but also detrimental to public health.</p>
<h2>Lessons from HIV</h2>
<p>In the 1980s and ‘90s, many people were afraid to get tested because of the <a href="https://www.cdc.gov/hiv/basics/hiv-stigma/index.html">stigma attached to HIV</a>, even within the <a href="https://doi.org/10.1001/virtualmentor.2009.11.12.oped1-0912">health-care system</a> itself. The world has progressed considerably since then, both in its attitude towards 2SLGBTQ+ people and in the broader understanding of infection. </p>
<p>Back then though, many people did not want to know their HIV status because of the stigma. We can’t let that happen with monkeypox, <a href="https://www.cbc.ca/player/play/2044185667584">as 2SLGBTQ+ advocates have noted</a>.</p>
<p>Monkeypox is not as easy to transmit as COVID-19, but the fact is that all of us are equally susceptible, and all of us need to be aware and to prioritize measures that will extinguish this threat before it grows. The ongoing COVID-19 pandemic has proven the value of vaccination and the need for infected people to self-isolate to prevent spread, and we can apply those lessons to the monkeypox outbreaks.</p>
<p>Monkeypox symptoms <a href="https://www.canada.ca/en/public-health/services/diseases/monkeypox/symptoms-management.html">are very rarely life-threatening</a>, and include fever, chills, fatigue and muscle pain, followed by a distinctive rash. They typically take about 10 days to emerge after exposure, but can happen anytime between five and 21 days. Infectiousness usually takes two to three weeks to subside after that. Infectiousness ends around the time the hallmark lesions of monkeypox finally scab over and recede.</p>
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<img alt="Microscopic, colourized image of teal, oval-shaped monkeypox virus particles against an amber background" src="https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&rect=37%2C0%2C1751%2C1137&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=589&fit=crop&dpr=1 600w, https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=589&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=589&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=741&fit=crop&dpr=1 754w, https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=741&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/474744/original/file-20220719-91993-zmx8jk.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=741&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">It’s important that anyone who has had close contact with someone who has monkeypox get vaccinated if symptoms have not appeared, and self-isolate if they have.</span>
<span class="attribution"><span class="source">(NIAID, cropped from original)</span>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span>
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<p>During the window between exposure and the appearance of symptoms, there is a golden opportunity to stave off individual illness and halt the spread of infection overall by vaccinating exposed people as quickly as possible. In this way, we can build a wall around the outbreak.</p>
<h2>Mobilizing resources</h2>
<p>The HIV epidemic, tragic though it was, served to mobilize health resources for and by 2SLGBTQ+ communities, and today those existing networks are being activated to educate and assist those who are most at risk during this stage of the monkeypox outbreak. </p>
<p><a href="https://gmsh.ca/monkeypox/">The Gay Men’s Sexual Health Alliance</a>, for example, is proving to be a valuable hub for current and helpful information about monkeypox prevention, detection and vaccination, including information about vaccine clinics. </p>
<p>It is vitally important that anyone who has had close contact with someone who has monkeypox come forward to be vaccinated if symptoms have not appeared, and to isolate if they do have symptoms.</p>
<p>Isolating oneself, as we learned from COVID-19, is neither easy nor practical for a great many people. It is important that governments in Canada expedite financial supports that allow people with monkeypox to stay home and limit the spread of infection.</p>
<p>We have seen in both HIV and COVID-19 what happens when we don’t act in time. We know how to limit and end this outbreak, and we must take action now.</p><img src="https://counter.theconversation.com/content/187144/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kevin Woodward does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>To control monkeypox, there is a short window — weeks, not months — in which to vaccinate the most susceptible and to encourage and support self-isolation for those who have symptoms.Kevin Woodward, Infectious Diseases Physician, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1835712022-05-23T11:57:42Z2022-05-23T11:57:42ZMonkeypox isn’t like HIV, but gay and bisexual men are at risk of unfair stigma<figure><img src="https://images.theconversation.com/files/464743/original/file-20220523-18-c1u6pu.jpg?ixlib=rb-1.1.0&rect=13%2C13%2C4348%2C2883&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/miami-beach-gay-parade-647870272">Gyorgy Demko/Shutterstock</a></span></figcaption></figure><p>The <a href="https://www.who.int/emergencies/disease-outbreak-news/item/2022-DON381">first case of monkeypox</a> in the current outbreak was reported to the World Health Organization (WHO) on May 7. The person in question had recently returned to the UK from Nigeria, where they are believed to have contracted the infection. Since then, further cases have been reported in <a href="https://www.who.int/emergencies/disease-outbreak-news/item/2022-DON385">over a dozen countries</a> where the disease is not normally present, including several European countries, Israel, the US and Canada, as well as Australia.</p>
<p>It has attracted a morbid interest from the public and media. Strange new infectious diseases that the public is unfamiliar with, such as monkeypox, can generate a <a href="https://www.sciencedirect.com/science/article/pii/S1198743X14604614">disproportionate degree of fear in the population</a>. In part, this is due to its “exotic” nature, the fear of contagion, and the perception that it is spreading quickly and invisibly in the population. </p>
<p>This “germ panic” is further heightened by the off-putting visible disfigurements caused by the infection, even if only temporarily. In addition, the public health measures required, such as isolation procedures, healthcare workers suited up in personal protective equipment, and rigorous investigations and contact tracing, are all reminiscent of interventions an authoritarian police-state might use for some crime. Misleading information in the media, and especially social media, could further fuel public anxiety, as was the case with <a href="https://www.tandfonline.com/doi/10.1080/10410236.2018.1437524">Ebola in 2014</a>.</p>
<p>The more recent monkeypox cases did not have travel links to countries where the disease is endemic, which raises the possibility that the disease may have been silently spreading in the population for some time before it was detected. Many cases, but not all, that were recently <a href="https://www.who.int/emergencies/disease-outbreak-news/item/2022-DON383">reported were in gay, bisexual and other men who have sex with men</a>. This is unfortunate as there is a real danger here of further stigma being generated towards this group. </p>
<p>They have suffered tremendously over the years with the stigma attached to infectious disease, most notably with the HIV/Aids pandemic, and there is still a strong <a href="https://www.tandfonline.com/doi/full/10.1080/14681994.2010.515206?casa_token=1oXfvXJK4dIAAAAA%3AMCNKtpzVtX0Szgr3jTwXBXRnw6WxAVhhegohR7lqsuXKjQsozvSrxjDHUQ8JM1FJuubyJ844V7Nr6w">undercurrent of homophobia</a> even in countries with strong LGBTQ+ rights. This is despite a lot of effort by the LGBTQ+ community, public education programmes and equal rights legislation to tackle stigmatisation. </p>
<p>There are lessons we need to learn from the HIV/Aids pandemic. Some of the stigma was driven by deeply held religious and cultural beliefs in society that unfairly equated their sexuality with notions of immorality and negative stereotypes of promiscuity. Gay and bisexual men were <a href="https://www.publish.csiro.au/SH/pdf/SH16052">blamed as the source and cause of HIV spread</a>, even though it was also spread through other routes such as heterosexual sex, from mother to child, needle-stick injuries and contaminated blood products. The situation was <a href="https://link.springer.com/article/10.1007/s10461-019-02607-4">worse for men from an ethnic minority background</a>, where racial prejudices and stereotypes added to the stigma.</p>
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Read more:
<a href="https://theconversation.com/monkeypox-qanda-how-do-you-catch-it-and-what-are-the-risks-an-expert-explains-183606">Monkeypox Q&A: how do you catch it and what are the risks? An expert explains</a>
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<p>This, in turn, had serious <a href="https://www.tandfonline.com/doi/full/10.1080/09540121.2011.613910">consequences for the people affected</a>, especially on their mental and emotional wellbeing. It affected their social and sexual relationships, leading to rejection by their partners and social isolation. It resulted in some changing their health behaviour that led to delays in seeking healthcare. It meant some were not prepared to disclose who their contacts were – this would hinder outbreak investigations and control efforts by public health teams trying to track down the disease and stop its spread.</p>
<p>So how should we tackle this outbreak? First, public health initiatives, such as clear, timely and transparent public education about the disease, can help allay public fears. Increased public access to reliable health information sources would also help. But we need to get the message out there about monkeypox sensitively, without stoking fear and mistrust and inadvertently alienating men who have sex with men. </p>
<p>We need to help the public put the risk of this disease in perspective – it is usually a mild, self-limiting illness that usually goes away on its own within a few weeks, and it does not spread that easily. We need to reassure the public that this is <a href="https://theconversation.com/what-is-monkeypox-a-microbiologist-explains-whats-known-about-this-smallpox-cousin-183499">not a new disease</a> – scientists have studied it for years and have a good understanding of how it spreads and its health consequences. We can also reassure those who have been exposed that there is an <a href="https://www.cdc.gov/poxvirus/monkeypox/clinicians/treatment.html">effective vaccine against it</a>.</p>
<h2>Not about sexuality</h2>
<p>We need to get across the message that <a href="https://speakingofmedicine.plos.org/2022/05/19/monkeypox-is-not-a-gay-disease/">monkeypox is not a disease of men who have sex with men</a>. It is not about sexuality: people tend to be infected through close physical contact and it does not have to be sexual in nature. Infected people will tend to infect people they have close contact with, which is why <a href="https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0007791">the risk of spread is high in affected households</a>. </p>
<p>So while a high proportion of cases have so far occurred among men who have sex with men, in part this reflects their social networks. It could just as easily have been an outbreak in a heterosexual friendship network, or a group of sports people, or occupational group, or other social groups. Would it have carried as much risk of stigma then? </p>
<p>Another danger of mis-portrayal of the monkeypox outbreak as a phenomenon that only affects men who have sex with men is that others who at risk – for example, household members – may not realise this and fail to protect themselves. We also need to alert and inform travellers to <a href="https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0010141">endemic areas in west and central Africa</a> as they may not realise there is a risk there. </p>
<p>Our best chance of snuffing out this outbreak quickly is through early detection and quarantining people who are infected and protecting their close contacts through vaccination, to break the chains of transmission. As we know all too well from our experience with HIV, stigma won’t help.</p><img src="https://counter.theconversation.com/content/183571/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Andrew Lee has previously received research funding from the National Institute for Health Research. He is a member of the UK Faculty of Public Health and the Royal Society for Public Health.</span></em></p>We need to learn the lessons from the HIV/AIDS epidemic and avoid stigmatising men who have sex with men.Andrew Lee, Professor of Public Health, University of SheffieldLicensed as Creative Commons – attribution, no derivatives.