tag:theconversation.com,2011:/ca/topics/haemophilia-4968/articlesHaemophilia – The Conversation2018-02-05T09:49:37Ztag:theconversation.com,2011:article/909792018-02-05T09:49:37Z2018-02-05T09:49:37ZCan England really eliminate hepatitis C by 2025?<figure><img src="https://images.theconversation.com/files/204735/original/file-20180204-19921-3pnw69.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/559630771?src=EcfCLqUhuXJOLzuTvXA3zw-1-40&size=medium_jpg">nokwalai/Shutterstock</a></span></figcaption></figure><p>The World Health Organisation set a goal to eliminate hepatitis C by 2030. The NHS recently announced that it will go one better than that: it will eliminate the disease in England by <a href="http://www.pharmatimes.com/news/nhs_plans_to_be_first_to_eliminate_hepatitis_c_1219469">2025</a>. In theory, the goal is achievable, but there are still significant challenges to overcome. </p>
<p><a href="https://www.nhs.uk/conditions/hepatitis-c/">Hepatitis C</a> is a viral infection that causes chronic liver disease, which can lead to life-threatening complications. Thankfully, a new class of drugs, known as direct-acting antivirals (DAAs) has revolutionised hepatitis C treatment. A three month course of DAAs can clear hepatitis C from the blood. </p>
<p>The drugs aren’t perfect, though. They have a failure rate of <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4970473/">around 10-15%</a>. However, the real problem with eliminating the disease lies in the hidden nature of the hepatitis C epidemic in the UK.</p>
<p>For many years it was known that some blood donations, or products made from blood, such as factor VIII used to treat haemophilia, contained an unknown virus that inflammed the liver (hepatitis) in patients who received a transfusion. The identity of this virus remained unknown until the mid-1980s when the development of new technologies allowed the virus to be identified by its gene sequence. </p>
<p>Tests on blood donations soon followed, designed to help prevent the transmission of the virus by transfusion or during surgery. As these tests were applied more widely, though, the real extent of the problem with hepatitis C virus began to emerge. </p>
<p>By the early 1990s, it became clear that many more people were infected than previously thought. Two groups were particularly affected: those who had been infected through medical treatment (including some children who had been infected by their mother either in the womb or during the process of birth), and a second much larger group who had used illegal drugs (injecting or inhaling drugs through the nose). Many of the infected people had not used drugs for years.</p>
<p>Hepatitis C doesn’t usually cause symptoms in the early stages of infection, but the virus remains in the liver, causing a hidden and silent infection in at least 80% of cases. (In 20% of cases, the patient’s immune system manages to clear the virus on its own.) Over decades, the infection causes progressive liver damage. By the time the patient begins to suffer from fatigue as a result of the infection, liver failure and liver cirrhosis has usually set in. This can progress to liver cancer (hepatoma) and premature death. Globally, hepatitis C virus infection is now a leading cause of liver transplantation.</p>
<p>As with many viral infections, at first there were few treatment options. The antiviral drug interferon was tried with limited success. Treatment was improved when interferon was combined with a second antiviral drug, ribavirin. However, some strains of the virus proved very difficult to treat, requiring 12 months of continuous therapy, and even then the infection sometimes returned <a href="https://link.springer.com/content/pdf/10.1007/s11901-006-0014-z.pdf">once treatment stopped</a>. </p>
<p>The development of DAAs has revolutionised treatment of hepatitis C virus infection. Now, short treatment courses effectively cure the infection in a high percentage of cases. Because of this, transmission of the infection between people can be stopped, leading to the enticing prospect that hepatitis C virus infection could be eliminated. </p>
<p>Elimination should not of course be confused with eradication. So far, only one human virus infection, smallpox, has been eradicated. Others, <a href="http://www.who.int/features/factfiles/polio/en/">such as polio virus</a>, are close to global eradication.</p>
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<span class="caption">Hepatitis C virus.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/484370686?src=-nUn9GHvj9eSGHQy4l81cg-1-3&size=medium_jpg">fotovapl/Shutterstock</a></span>
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<h2>A hidden disease</h2>
<p>The current problem with hepatitis C infection is not how we should treat it, it is rather how do we identify those who are infected so that they can be guided into treatment and cure. For those who contracted infection through medical interventions and do not know they are infected, they may not yet be suffering the symptoms of long-term infection that would cause them to seek medical help. The biggest problem, however, lies with drug users – a social group that tends to actively avoid the health system for fear of being challenged or stigmatised because of current or former drug use. </p>
<p>In order to reach these two groups of infected people, new approaches to diagnosis outside of conventional healthcare facilities need to be much more widely applied. Simple rapid tests on blood or saliva specimens that can be used anywhere, or even self-collection of blood dried onto filter paper spots (known as “<a href="https://en.wikipedia.org/wiki/Dried_blood_spot">DBS testing</a>”), offer ways to greatly extend the numbers of people who come forward for diagnosis. The wider application of these tests will be an essential step in persuading people who may be in denial about their risk of infection into a programme that offers a cure. </p>
<p>Hepatitis C virus could be eliminated. The treatment to do this is available, it appears to be <a href="https://www.ncbi.nlm.nih.gov/pubmed/28836278">cost effective</a> and the technology to provide quick and easy diagnosis is available. However, a concerted and coordinated effort to reach the infected, but untested public, will be necessary if the NHS is to achieve its worthwhile goal of eliminating hepatitis C in England by 2025.</p><img src="https://counter.theconversation.com/content/90979/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Paul Klapper received funding from the Greater Manchester Hepatitis C Strategy. He is affiliated with The Labour Party. </span></em></p><p class="fine-print"><em><span>Pam Vallely is affiliated with The Liberal Democrats Party. </span></em></p>If England eliminates hepatitis C, it will be the first country to do so. But how feasible is it?Paul Edward Klapper, Chair Professor, University of ManchesterPam Vallely, Chair in Graduate Education, University of ManchesterLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/743082017-04-17T08:34:02Z2017-04-17T08:34:02ZMaking circumcision safer for young men with bleeding disorders<figure><img src="https://images.theconversation.com/files/164798/original/image-20170411-31911-dw2quo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Haemophilia impairs the body's ability to make blood clots causing excessive bleeding.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p><em>Circumcision is the <a href="http://www.medicalnewstoday.com/articles/302234.php">oldest and most frequent</a> surgical procedure in the world. In some cultures, it marks a clear break from childhood to adulthood. But, reports of young men <a href="https://www.theguardian.com/commentisfree/2014/aug/25/male-circumcision-ceremonies-death-deformity-africa">dying</a> during traditional initiation rites due to spontaneous bleeding are devastating. The Conversation Africa’s Health and Medicine Editor Joy Wanja Muraya asked Dr Peter Kibet Shikuku for his views on a safe circumcision programme in Kenya for boys with haemophilia – a bleeding disorder.</em></p>
<p><strong>How prevalent is haemophilia in Kenya?</strong></p>
<p>Most patients with haemophilia are born with it, <a href="https://www.rarebleedingdisorders.com/bleeding-disorders/congenital-hemophilia.html">congenital</a>, while others <a href="http://www.haemophiliacare.co.uk/acquired-haemophilia.html">acquire it</a>.</p>
<p>Patients must see a specialist, a haematologist, before any surgery to control their bleeding. While circumcision is not a major operation, it can lead to <a href="https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders">death</a> because the bleeding is slow, consistent, continuous and prolonged.</p>
<p>The prevalence of haemophilia is the same in all communities and remains at <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181156/">1 per 10,000</a> in any population. As a country we have only reached awareness of the disease at 14% of those affected.</p>
<p><a href="http://www.hemophiliaprince.com/myths-about-hemophilia.html">Superstitions </a> are driven by lack of awareness in the communities forcing some parents to hide or lock away their children from the general public due to associations of the condition with bad omen.</p>
<p>During circumcision by traditional healers, the injured young men and those slow to heal are abandoned in the forest to die. Circumcision, they say, is not for weaklings.</p>
<p><strong>How different is circumcision for haemophiliacs?</strong> </p>
<p>Circumcision carries different meanings in Africa and globally. In most communities in Kenya, it’s a <a href="http://www.cirp.org/library/cultural/marck/">rite of passage</a> practiced by most communities on boys and/or girls.</p>
<p>It involves either the removal of certain <a href="https://kenyastockholm.files.wordpress.com/2008/08/luocircumcisionrites_03.pdf">teeth</a>, tattooing parts of the body, piercing of earlobes, removal of the <a href="http://www.medicalnewstoday.com/articles/302234.php">foreskin</a> or a combination of practices.</p>
<p>During these rites blood is lost, with a few complications occurring. But, some young men die due to lack of adequate testing for <a href="https://www.haemophilia.org.au/about-bleeding-disorders/haemophilia">haemophilia</a> - a genetic disorder that impairs the body’s ability to make blood clots.</p>
<p>This is complicated by <a href="http://www.who.int/bulletin/volumes/88/12/09-072975/en/">lack of information</a> within the circumcising communities on the bleeding disorder. The uninitiated are often <a href="http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0083998">stigmatised</a>, ridiculed and bullied by their peers.</p>
<p>Because of this, some young men do not disclose that they’re haemophiliac and undergo circumcision without the precautionary measures, leading to complications, and even death. </p>
<p>Blood clot elements that manage haemophilia during circumcision are not readily available and are <a href="http://www.hemophiliafed.org/bleeding-disorders/hemophilia/treatment/">expensive</a>. The missing factor protein is <a href="http://www.hemophiliafed.org/bleeding-disorders/hemophilia/treatment/">injected</a> into the affected person’s vein enabling the body to continue the clotting and hence stop the bleeding.</p>
<h2>First case study</h2>
<p>A 23 year old man in high school was under peer pressure to get circumcised. They threatened to forcibly circumcise him themselves. He knew he had haemophilia and needed the <a href="https://www.cdc.gov/ncbddd/hemophilia/treatment.html">factor concentrate</a>.</p>
<p>He travelled from one health facility to another to accumulate enough of the concentrate . But, it wasn’t enough and he was circumcised with these expired products in one of the health facilities. </p>
<p>He developed antibodies to factor eight on the fifth day after the operation and ended up with a by passing agent to overcome the antibodies till he healed. It’s not even possible to establish the reason behind antibody development in this patient.</p>
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<figcaption><span class="caption">Dr Kibet Shikuku talks about the impact of working with the World Federation of Hemophilia.</span></figcaption>
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<h2>Second case study</h2>
<p>A young man in his 20’s with haemophilia had suicidal tendencies. Being “uncut” was unacceptable and demeaning in his community.</p>
<p>He got clinicians to take him through the procedure even though they had very limited resources. A group of consultants decided to use blood components, a few factor concentrates and tranexamic acid. This combination worked despite the shortcomings associated with it. He recovered and is now one of Kenya’s paralympic sportsmen. </p>
<p><strong>What strategies and technologies are used to ensure safer circumcision amongst haemophiliacs?</strong></p>
<p>There are 450 young men attending the haemophilia comprehensive care clinic at Kenyatta National Hospital and Moi Teaching and Referral Hospital. They make up about 10% of all haemophiliacs countrywide. </p>
<p>Most of them are not circumcised despite coming from circumcising communities, because of haemophilia. That is because of the lack of factor concentrates which are essential in <a href="http://www.businessdailyafrica.com/Special-circumcision-knife/539444-3437776-8odmfo/">preventing bleeding</a>.</p>
<p>At <a href="http://knh.or.ke/">Kenyatta National Hospital</a>, circumcision was the least of procedures to be offered to haemophiliacs due to lack of factor concentrates. The clinical team opted to use tranexamic acid alternating it with cryoprecipitate to stop heavy bleeding, commonly used in peripheral facilities by uninformed surgeons. </p>
<p>This seemed to have worked though in case of any inhibitor development, there were almost no alternative treatment and fatalities were almost the norm.</p>
<p>Towards the end of 2015, <a href="http://haemophilia-kenya.org/index.php">Kenya Hemophilia Association</a> initiated a “safe” circumcision programme in the two health facilities, that has led to circumcision of about 30 haemophilia patients. All the young men were prepared before the surgery by getting clotting factors and later followed up in the wards until they got fully healed.</p>
<p><strong>What challenges do you face running this safer circumcision programme? What lessons have you learnt?</strong></p>
<p>The lack of cost effective drugs to manage patients during circumcision is the most urgent concern.</p>
<p>The shortage of factor concentrates in public hospitals and clinics forces us to rely heavily on <a href="http://humanpathology.uonbi.ac.ke/node/4270">donations </a>from the World Federation of Haemophilia. The availability of the concentrates in select health facilities locks out families with haemophiliac young men from safe circumcision.</p>
<p>Since the safe circumcision programme started, parents are bringing <a href="https://www.standardmedia.co.ke/evewoman/article/2000120029/silent-medical-condition-that-kills-quietly">their sons </a> for registration. This has enabled the programme to schedule with the surgeons all procedures annually. </p>
<p>We are creating <a href="https://www.standardmedia.co.ke/health/article/2000209632/victim-of-blood-disorder-lends-hand-to-those-with-same-condition">public awareness </a> of the signs and symptoms associated with the disease so that people can seek help early, before the young men reach circumcision age.</p>
<p>For young men who wish to keep to their cultural initiation rites, we have trained nurses to deliver the clotting factors at the village during circumcision supported by the traditional surgeons, elders and other decision makers.</p>
<p>Overall, fewer cases are now being brought to the hospital as emergencies following circumcision as compared to before. The programme intends to determine the best protocol which is cost effective and easily implemented at the lower health facilities in the counties.</p><img src="https://counter.theconversation.com/content/74308/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Kibet Peter Shikuku receives funding from.get funding from Novo Nordisk Hemophilia Foundation and world federation of hemophilia
</span></em></p>Circumcision is a rite of passage in various African communities. However, for initiates with haemophilia, extra caution needs to be taken to ensure their safety.Kibet Peter Shikuku, Lecturer, School of Medicine (SOM)University of Nairobi (UON) and Consultant Haematologist, University of NairobiLicensed as Creative Commons – attribution, no derivatives.