Organ failure doesn’t discriminate but donation does

Organ donation isn’t so black and white. Shiela Tostes

Organ failure affects people from a wide range of social, age, gender, educational, cultural, faith and ethnic backgrounds. Minority ethnic groups already experience many health inequalities and transplant services are no different. And significant variation exists between groups – in demand, access, and waiting times for these services.

Donation is on the increase, but so is demand for more organs. And while surveys show a majority agree with donation, most people don’t sign up. A new nationwide strategy aims to “radically change” our attitudes to donation and increase the number of people donating to a third by 2020.

About 8,000 people are currently waiting for transplants in the UK, and a disproportionately greater number come from minority ethnic backgrounds. For example, people of South Asian origin represent 17% of those waiting for a kidney transplant even though they comprise only 6% of the general population. African/Caribbeans make up over 9% of the waiting list compared to 3% of the UK population. However, only about 4% of people who donate organs after their death are from a South Asian or African/Caribbean background.

We desperately need to increase the number of organ donors from minority groups. This would help tackle the problem of tissue-matching, crucial to transplants. Just because you’re black or Asian, for example, shouldn’t mean you aren’t able to get a vital transplant.

Why consider organ donation?

Minority ethnic communities are at greater risk of developing organ failure for a number of complex reasons. These range from genetic predisposition, increased prevalence of underlying conditions, and poorer access to and uptake of services.

Prevalence of Type 2 diabetes is up to six times greater among South Asians and African-Caribbean communities than in the white population. Around 20% of South Asians aged between 40–49 have Type 2 diabetes and by the age of 65, this proportion rises to a third.

South Asian and African/Caribbean patients that receive therapy for kidney failure (either by dialysis or transplantation) have a four times greater relative risk of end-stage renal failure caused by diabetic nephropathy - a progressive kidney disease - than their white counterparts.

Family consent rates among ethnic minorities when a family member dies have remained stubbornly static; white families are still much more likely to agree to donate – the difference is around 30% of non-white families giving consent compared to 68% of white families.

Religion and culture

Issues related to religion and culture are often used by many individuals to guide their decision as to whether to donate or not, and sometimes religion and culture are conflated. None of the religions object to organ donation in principle, although in some there are varying schools of thought. There is a need to encourage religious leaders to engage with their congregations concerning the issue of organ donation and transplantation.

The government and the NHS Blood and Transplant authority have developed a new strategy to tackle the needs of the UK’s multi-ethnic and multi-faith population. This includes raising awareness of the need for donation to benefit their own communities.

Programmes to encourage more Africans, Caribbeans and South Asians to join the register are still yet to be evaluated. We need to do this for all public organ donor campaigns to identify which members of the public benefit from such campaigns and who still isn’t being reached.

We also still need to identify how best to unravel “cultural” as opposed to “religious” concerns. Within hospitals, there need to be clear guidelines on how to approach individuals with requests for the donation of their loved one’s organs, coupled with specific training and counselling relating to working with families from a range of ethnic and faith backgrounds.

There is better training now for specialist nurses involved in organ donation in how to approach families and the recent specific measures outlined in the government’s strategy could have a tangible impact. And the increase in consent shows green shoots. But the situation is urgent and we can’t be complacent. The challenge now is to ensure momentum and appropriate resources.