NHS “inaction” for more than a decade is causing unnecessary deaths of black, Asian and minority ethnic transplant patients, a report by MPs has concluded.
An inquiry into organ donation in the UK found that minority ethnic and mixed heritage people faced a “double whammy of inequity”: they are more likely to need donors, because they are disproportionately affected by conditions such as sickle cell and kidney disease, and they are less likely to find the right blood, stem cell or organ match on donor registers.
Matching tissue type is vital to the chances of successful treatment, and compatible donors who are not relations are more likely to be found among donors from a similar ethnic background.
While there are more donors than in previous years, the all-party parliamentary group (APPG) for ethnicity transplantation and transfusion’s inquiry report says just 7.1% of blood donors, 16.7% of stem cell donors and 10.2% of organ donors are of minority ethnic or mixed background. As a result, white people are nearly twice as likely to find a stem cell donor and 20% more likely to find a kidney donor.
The chances of finding a well-matched stem cell donor are 72% for white patients and just 37% for BAME people, the MPs found. One year after being listed for a kidney transplant, 81% of minority ethnic and mixed-heritage patients will still be waiting for a new kidney, compared with 65% of white patients. Black people are also 10 times more likely than white people to need type Ro blood, of which there are more limited supplies.
The inquiry found a “staggering lack of consistent and detailed ethnicity data” within healthcare systems, which “undermines accountability and jeopardises the lives of those awaiting life-saving treatments”.
These stark disparities are not new. The UK Stem Cell Strategic Forum proposed action in 2010 to tackle weaknesses in stem cell transplantation services, including better data collection, but its recommendations have still to be fully implemented, the report says.
Jackie Doyle-Price, a Conservative member of the APPG, said: “Lower rates of donation in some communities is leading to inequality in outcome for those in need of organs and stem cells. This must be tackled in order to save lives. Ministers need to show leadership to break down the practical and cultural barriers to progress.”
Sarah Olney, the Lib Dem chair of the group, said more than “a decade of inaction”, with services and communication focused “predominantly” on a white audience, was unacceptable. “With one in five of the UK population now mixed heritage and ethnic minority, rising to one in three of school-age children, this has to change,” she said.
The report calls on the government to appoint a minister for transplant and transfusion inequalities and an equality tsar to “galvanise action”. It also proposes a ministerial review of all organisations involved in patients’ transplant and transfusion journeys. The impact of families’ right to overturn donors’ wishes under 2019 legislation on the number of mixed heritage and ethnic minority donations should also be examined.
Responding to the findings, Habib Naqvi, the chief executive of the NHS Race and Health Observatory, said such stark ethnic disparities in organ donor participation were of “grave concern” and required “more investment from health providers and targeted campaigns to raise awareness” to build trust in the healthcare system.
Jabeer Butt, the chief executive of the Race Equality Foundation, said the inequalities were unacceptable. “Every person, regardless of ethnic background, deserves an equal chance at receiving life-saving transplants and donations when needed. This is a solvable problem, but it requires a shared commitment to action across government, health organisations and communities. Lives depend on it,” he said.
An NHS Blood and Transplant spokesperson welcomed the report. She said: “Recruiting Black heritage blood donors is the focus of our campaigns, partnerships and community work. We’re pleased more people than ever before of Black African and Black Caribbean heritage are regularly donating.”
New ways to ensure patients get well matched blood, organs and stem cells, such as a new blood group genotyping programme, could “transform transfusion care for patients with sickle cell and thalassaemia,” she added.