Hairdressers in the UK have been trained to talk to clients about organ donation, helping to achieve a record number of BAME organ transplants. Given that minority groups are less likely to have a Covid vaccine, what can be learned from the initiative to increase acceptance?
The UK’s coronavirus vaccination program could be considered a success so far, but behind the swift launch is a worrying reluctance to take the hit among Black, Asian and Ethnic Minority (BAME) communities.
The government has hinted that there will be more collaboration with religious groups and community leaders in the coming weeks to drive buy-in. Professor Gurch Randhawa, a public health expert at the University of Bedfordshire, says that communicating with “trusted messengers” is essential to getting BAME communities together and should have been done sooner. “These groups are well placed to build trust with the COVID-19 vaccine,” he explains.
The proof, if needed, is the work of community members promoting organ donation, which has helped achieve a record number of life-saving organ transplants for people of BAME origin.
Hairstylist Ireena Mwanza is one of those trusted messengers. Inside her silver monochromatic hair and beauty salon in Romford, Essex, she chatters with clients about “everything.”
“We talk about men, dating, business, married life, single parenting and organ donation,” he says. The latter is a recent addition to Mwanza’s 19 years as a hairdresser, after she enrolled in a project run by the Action on Blood charity. Called Hair2Debate, it trains hairdressers and barbers in black salons in London and Essex to start these vital conversations.
Former investment banker Abiola Okubanjo created Action on Blood in 2016. Originally, it was to organize blood donation in northeast Nigeria in response to a humanitarian emergency caused by the insurgency of Islamist militants from Boko Haram. When he returned home to London, he continued with the charity to raise awareness of all kinds of donations among local black communities.
The idea of using hairdressers as envoys for his mission came naturally. “Getting your hair done can be an all-day event, and hair salons and barbershops are really lively places; many things happen there ”, says Okubanjo. “But you also hear a lot of misinformation there. And since hairdressers often have authority in that situation, I thought they should know all the facts, so that they can start conversations about organ donation or have other conversations when the topic of organ donation comes up. “
“You hear a lot of misinformation” in hair salons and barber shops, says Okubanjo. Image: Edgar Chaparro
For a long time there has been a supply and demand crisis in organ donation for people in the BAME communities. They are disproportionately affected by conditions such as diabetes, which may require organ transplants, and there is a shortage of BAME donors.
Why? Research suggests it is complex: a historical distrust of the government and the NHS; the fear of medical exploitation for reasons of class and ethnicity among some groups; the perception that certain religions do not allow organ donation (although none of the major religions oppose it).
As a result, BAME patients tend to have fewer chances of finding suitable donors and longer wait times. But in 2019-20, the highest number of BAME patients in the UK received life-saving organ transplants – 1,187 people, according to the NHS Blood and Transplant (NHSBT). The number of BAME people donating organs after death has also increased, from 67 in 2015-16 to 112 in 2019-20.
While there is no “one-size-fits-all” behind this limited but promising development, Prof Randhawa says, awareness-raising work by community groups and faith-based organizations has been key.
We talk about men, dating, business, married life, single parenting, and organ donation.
This community work has been fueled by government funds allocated by the NHSBT to promote England’s switch to an opt-out organ donation system in May 2020, similar to Wales. The law change means that unless someone records a decision not to donate organs after their death, consent is presumed (although approval is still sought from the family of a deceased person after their death).
Churches, temples, gurdwaras and mosques have organized events to discuss the subject with their faithful and dispel myths. Fears have been raised in the past that their DNA will be tampered with or sent to the police, or even cloned. Another myth that circulates in the Afro-Caribbean community is that if you are registered as a donor and are involved in an accident, the doctors will not try as hard to save you.
Announcements about organ donation have been broadcast in Urdu on local radio stations, while information about the change to the opt-out law has been shared in Punjabi captioned videos on social media. Imams in the northeast of England have organized events, where doctors answer questions about organ donation and Muslim scholars debate why it can be considered halal. Hindu and Sikh organizations have used the concept of Sewa, a Sanskrit word that refers to selfless service in both religions, to convey the message, using the hashtag #OrganSewa.
Places of worship have hosted events to dispel myths about organ donation. Image: Rumman Amin
Meanwhile, Action on Blood has also partnered with Yinyinola, a BAME senior home care provider. They have produced brochures for caregivers to give out to community elders as a suggestion for discussing end-of-life wishes with the family, as not knowing the wishes of a loved one is one of the main reasons why grieving relatives refuse to donate their organs.
This approach has been successful, Randhawa suggests, because it addresses the biggest barrier to people becoming donors: lack of trust. “People need to trust the message and the messenger,” he says. “The message must be culturally competent and come from people you trust.”
Another factor behind the improvement in transplant rates has been a change to the NHSBT kidney supply scheme, says Lisa Mumford, head of organ donation and transplantation studies there. Since September 2019, “hard to match” patients, with rare tissue types or blood groups, who tend to be BAME patients, have been given higher priority.
The change was necessary, Mumford says, to make the system fairer and reduce the time people wait for a transplant – people like Fez Awan. The 34-year-old from Blackburn, Lancashire, who was born with kidney failure, had to wait eight years for his third kidney transplant in July 2020 while on dialysis for most of that time. On average, a white person will only wait a year and a half for a kidney.
“Living that has made me want to raise awareness and educate the people of BAME,” he says. Randhawa notes that the rise in donation of BAME organs is not a simple success story: a large imbalance persists between donors and patients in need of transplants.
People need to trust the message and the messenger. The message must be culturally competent and come from people you trust.
In financial year 2019-20, 32 percent of people on the transplant waiting list belonged to BAME groups, but only 7 percent of deceased donors came from these communities. Also, nearly 75 percent of the people who opt out of the new system come from BAME, mostly Asians. The disproportionate impact of Covid-19 on BAME communities is likely a reason for this, Randhawa suggests, with “trust in government at an all-time low.”
The pandemic has already caused a sharp drop in organ donation for all the deceased. What can be done? Randhawa urges the government to collaborate with the same trusted BAME community groups that are working to improve organ donation rates as part of their Covid-19 strategy.
As for Mwanza, as much as she misses “the exciting personalities and everyone chatting together” from the pre-Covid era, she plans to keep talking about organ donation instead of braids and color treatments when the salon reopens. “I have definitely changed my mind. Even with the Action on Blood posters on the wall and me saying that I believe in organ donation, some of my clients have reached out. “
Because for her it is personal: the father of a friend died in September 2020, after waiting three years for an organ transplant. “By the time he got it, his body collapsed and he rejected it,” he says. “Some black people are not sure about organ donation, but I tell them, ‘If your life was at risk, wouldn’t you want someone to save you?’