How doctors identified — and fixed — the race gap in kidney transplants

Over 100,000 people in the United States are waiting for kidney transplants, whether from live donors or those who have opted to donate after their deaths. Among them are racial and class minorities — in fact, minorities can be more at risk of kidney disease thanks to numerous cultural and class factors that contribute to ill health, including kidney disease and conditions that affect kidney health. Historically, there was a considerable racial gap when it came to kidney transplants, with white recipients tending to be more likely to get organs, but that gap, thanks to conscious policy changes, appears to have been eliminated — though injustices when it comes to the organ transplant list aren’t over yet.

The situation with kidneys is a reminder that medical racism is real — and that it can be addressed. Systemic policy changes are the only effective way to force the hands of the medical community when it comes to creating the kinds of guidelines that physicians can use to change their traditional stances, but they also need to be accompanied with outreach and education. Even as we reform institutions (like standards for transplants), we also need to tackle social structures (attitudes surrounding people with kidney disease and those waiting for new organs). These can feel like daunting tasks, but they’re critical components of a just society.

Members of the Black community experience kidney failure at a rate three times higher than the white community. Diabetes is typically a major contributing factor. While some risks for kidney disease can be inherited, it’s also strongly a condition of circumstances. If you live under extreme stress — like racism — you tend to be more likely to become ill. If you’re working class or in the lower classes, it’s more difficult to access health care and you may not be able to get the preventative support and treatment you need. Unhealthy conditions like those found in minimum wage workplaces, polluted communities, and more further contribute to ill health. This set the stage for a situation in which more members of the Black community needed transplants, but they weren’t getting them.

The causes behind that were complicated. One was, to put it bluntly, medical racism. Diagnosis of chronic medical conditions tends to lag for members of the Black community, and in addition, doctors may not be as aggressive with treatment. Many people can’t afford the medications needed to manage kidney disease (yes, even after health insurance reform) and thus get dinged for not managing their kidney disease effectively. Others land on the exclusion list for other reasons, and UNOS is extremely picky about who gets listed for organs, choosing a utilitarian view when it comes to prioritising organ organ recipients.

Members of the Black community also have a historic distrust of institutional medicine, and one that’s well warranted. Many fear the risks of live kidney donation and Black organ donors are less common because people fear the implications of things like beating heart organ donation — the best way to get viable organs, but also an approach to donation that feels, to some, like harvesting organs from living people. Given the historic abuses the Black community has endured at the hands of the medical establishment, there’s not a strong incentive to agree to organ donation with that in mind — which meant that fewer Black organs were available for patients who needed them. The medical community has failed repeatedly when it comes to reaching out to establish trust within communities of colour.

Researchers determined that one way to address the problem would be to change UNOS standards, which historically limited kidney donation by ethnicity — as a white person, for example, I couldn’t donate a kidney to a Black person (whether a living donation or after my demise). While two Black individuals are more likely to have the necessary protein markers for a strong match than a pair of interracial donors, that doesn’t mean interracial donation is impossible. By lifting these restrictions, UNOS opened more organs to a greater percentage of the Black community, increasing the chances of matching and receiving a transplant.

Researchers found that the move radically cut racial disparities in kidney transplantation, and along the way, it highlighted some more deep-seated problems within the medical system. Specifically, they discovered that race and class are obvious factors in who accesses health care and gets on the transplant list in the first place — in other words, there’s likely still a disparity in terms of who is in renal failure and who is getting transplants, it’s just not as visible, because not everyone with failing kidneys goes on the list. Moreover, some people don’t even put themselves on the list because their doctors haven’t provided them with adequate information or because they fear they won’t be able to afford immunosuppressants and associated care — it’s expensive to take drugs that suppress your immune system for life, and they put you at a much higher risk of medical complications in the future, which can translate to thousands or tens of thousands in added health care expenses with or without insurance.

It’s not as simple as overmapping the changes in policies with kidneys to other organs or medical racism at large, and the medical community still needs to take steps to address deeper disparities, but it’s a good start. Research on the subject shows that by identifying disparities and being honest about them, we can start to talk about ways to address them, ensuring that all people of colour — and other minorities — have equal access to the health care system, which has not historically been the case. I’d like to live, ultimately, in a world where the Black community isn’t at higher risk of health problems because of racism, but in the short term, making sure those health problems are addressed is critical.

Image: Dying for a Kidney, Karol Franks, Flickr