A call to save Black lives through organ donation

Somone Washington was only 24 years old when she was diagnosed with end-stage renal failure. In 2010, she received the kidney that would save her life, joining the just over 83,000 Black Americans who have received a transplant in the last decade.

Thirty-thousand Black Americans are still waiting for their lives to be saved by organ donation.

As we mark National Donate Life Month this April, is a time to look at the health inequities and opportunities that exist in the organ transplantation community.

Across the country, more than 100,000 Americans are waiting for a heart, liver, lung, kidney, or pancreas.

These same challenges that are contributing to Black organ failure have also led to a 15 to 30 percent lower donation rate in non-white communities.

Nearly 60 percent of those waiting for a transplant are a person of color, of which, 29 percent are Black. With disproportionately higher rates of diabetes, high blood pressure and heart disease, Black Americans are almost four times more likely than white Americans to have kidney failure. Yet, we are significantly less likely to be put on the transplant waitlist, as well as less likely to receive a lifesaving transplant even once we are.

Most often same-ethnicity donors and recipients are more likely to be clinical matches for transplant, so if there are fewer of us who are donors that means fewer Black recipients, which means more of us will lose our lives because of this.

The causes of this disparity are often traced back to challenges unique to non-white Americans: less access to medical care, barriers to health and nutritional information, historical mistrust and mistreatment within the medical system, and “weathering,” a term sociologists use to describe accelerated health declines in Blacks.

These same challenges that are contributing to Black organ failure have also led to a 15 to 30 percent lower donation rate in non-white communities. Closing this gap means saving Black lives.

In 2020, just 13 percent of organ donors were Black. Millions of families don’t consider organ donation until the worst moment of their lives: the death of a loved one. This is why it is so important for those involved in organ donation work, including doctors, organ procurement organizations and transplant centers, to continue to work to reach these families before the hospital.

There is much more work to be done.  This work can and must start in the community with simple relationship building.

Community level work opens a two-way dialogue where leaders and families can discuss concerns with medical professionals.

In California, as in much of the nation, our community institutions and leaders hold the trust of those around them. Building these relationships from the ground up is critical — it is the most effective way of combatting mistrust, addressing misconceptions, and starting to create a dialogue that can change systems that historically have not worked for our communities.

For example, in Southern California the local organ procurement organization, OneLegacy, is working with organizations like California Black Health Network, that reach the community through health advocacy and academia respectively, as well as with local churches, community clinics and similar, locally focused organizations, to grow trust, comfort and support around the idea of donation before a family ever sets foot in the hospital.

Organ donation can happen two ways: 1) registering for the pink donor dot or 2) family authorization in the hospital.

Community level work opens a two-way dialogue where leaders and families can discuss concerns with medical professionals and begin to truly address some of the issues that have led to disparities.

Another critical part of this dialogue is debunking some common, but inaccurate, myths that create misperceptions about organ donation — and have led to lower registration and family authorization.

For example, registering as a donor will not impact how hard doctors and nurses work to save someone’s life in the hospital. Nor does organ donation impact a family’s ability to have a proper funeral and celebration of life. Organ donation is also supported by all major religions. Finally, donors should know that organs are provided to those who need them most.

One’s position on the waiting list is never privileged or disadvantaged by race or wealth. In fact, 72 percent of transplants facilitated OneLegacy are received by a person of color.

Fostering meaningful relationships with trusted community partners who can use their voices to dispel these myths makes an impactful difference.

Twenty years ago, non-white donation rates were only 25 percent regionally — today these rates are up to 70 percent, far exceeding the national average of 53 percent. This is still not enough.

We can make a difference as individuals and consider giving back and leaving a legacy as an organ donor to help someone in need and whose life may depend on receiving a transplant. We can also make a difference by ensuring that we center racial equity in all organ donation policy decisions and healthcare decisions.

We must do our part to make sure that a patient’s ethnicity in no way limits the opportunity for extending and/or saving their life.

We speak directly to our community when we say you can make a difference. Black Americans are waiting for organs, and we can help bring renewed life to these families. A single donor can save up to eight lives through organ donation.

This National Donate Life Month, talk to your friends, families, and communities. Registering is simple, free and the ultimate act of kindness. Find out more about organ donor registration for Black Americans, click here.
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Editor’s Note: Rhonda M. Smith is  executive director of the California Black Health Network, which advocates on behalf of health equity for African Americans and Black immigrants.