As part of the American Kidney Fund's (AKF) 2021 Kidney Action Week, our government relations team hosted a virtual Congressional briefing on Increasing Kidney Transplants in Communities of Color. The briefing featured panelists who discussed their personal experiences with kidney transplantation, as well as the systemic barriers that limit both transplants and living organ donation in communities of color. The goals of the briefing were to educate viewers about this important issue, provide recommendations for policymakers and inform people of color who may be directly impacted by these disparities of ways they can advocate for themselves.
The health disparities that lead to higher incidence of kidney failure in communities of color also lead to barriers in accessing kidney transplants. Race, older age, less social support, lower income, more comorbidities, type of insurance coverage, and fewer transplant learning activities have been associated with a lower probability of kidney transplantation. Learn more about this issue here.
Several themes emerged across the panelists' presentations that illustrate the current issues causing disparities in transplants in communities of color:
- Disparities in access to donor kidneys, especially live donor kidneys
- Financial barriers to living organ donation and kidney transplantation
- Access barriers to being listed at multiple transplant centers
- Distrust of the medical establishment and myths around organ donation in communities of color
The Congressional briefing opened with remarks from LaVarne A. Burton, AKF's President and CEO, and was moderated by Frances Ashe-Goins, RN, MPH, FAAN, member of AKF's Board of Trustees. Dr. Ashe-Goins is an adjunct professor at the University of South Carolina and former Deputy Director for the U.S. Department of Health and Human Services Office on Women's Health. She has also advocated as an AKF Ambassador while serving as a caregiver to her daughter who fought kidney failure for many years.
Although Congresswoman Lisa Blunt Rochester (D-DE) was going to help kick-off the briefing, she was unable to attend and Andrew Donnelly, her Communications Director & Senior Advisor, graciously filled in to speak about a bill that AKF has been spearheading in partnership with the Congresswoman. H.R. 3893, The Coordination, Accountability, Research and Equity (CARE) for All Kidneys Act of 2021, would implement interventions to better understand and manage kidney disease in communities of color, rural communities and other underserved communities nationwide. TAKE ACTION: In just two minutes, you can contact your representative through our website and ask them to cosponsor this important, bipartisan piece of legislation.
Next, Joseph Keith Melancon, M.D., Chief of the George Washington Transplant Institute and professor of surgery at The George Washington University Hospital, highlighted the work his transplant center is doing to address transplant access disparities in Washington, D.C. Dr. Melancon spoke about his experience as a transplant surgeon and his work around ethnic disparities, access to care and its impact on successful transplants. He recommended five ways clinicians and providers can decrease inequities in their transplant programs and improve outcomes for patients of color:
- Understanding that patients of color will be on dialysis longer, and accounting for this in their care, allowing for better odds of successful transplants
- Addressing biases in health care personnel, especially when it comes to personnel determining who is a good candidate to become a living donor
- Working in local communities to increase knowledge about living kidney donation and transplantation
- Taking into account socioeconomic status when predicting post-transplant outcomes
- Advocating for policy solutions that would combat inequities, like H.R. 1255/S. 377, The Living Donor Protection Act of 2021, which would provide financial support for living donors and remove barriers to organ donation
Without the federal Living Donor Protection Act, states have a patchwork of living donor protections, with some states providing no protections at all. AKF strongly supports the federal Living Donor Protection Act, and we have also been spearheading living donor protection legislation in states across the country. Earlier this year, we released our first annual State of the States: Living Donor Protection Report Card, which grades each state and Washington, D.C. on how well they protect living donors by measuring seven types of legislation they could pass. The average grade for the U.S. is a D. See what your state's grade is and how it compares to other states' grades at livingdonor.KidneyFund.org. TAKE ACTION: In just two minutes, you can contact your members of Congress through our website and ask them to support the Living Donor Protection Act.
Ken Sutha, M.D., Ph.D., Instructor of Pediatric Nephrology at Stanford University and an AKF Ambassador, discussed his work as a pediatric nephrologist, as well as his personal experiences as an Asian American pediatric kidney patient and transplant recipient. Dr. Sutha explained that receiving a transplant can have a huge impact on pediatric patients, but there are access problems for both transplants and pediatric dialysis, as few centers in the country are set up to handle pediatric kidney patients. Families often must relocate in order for their child to obtain treatment. He also discussed the long waitlist times for a donor kidney in various parts of the country, including his home state of California, and how these waitlist times have a disproportionate impact on people of color.
The next speaker was Nichole Jefferson, a kidney transplant recipient and AKF Ambassador from Dallas. She highlighted challenges she has faced as a Black woman, including doctors not listening to her experiences and failing to act on her kidney disease or the rejection of her first transplant. Nichole stressed the importance of patient self-advocacy in navigating the transplant system, including helping patients understand that they can be listed at multiple transplant centers, educating patients about the option to receive sub-optimal kidneys, and trusting their own bodies and making sure doctors were listening to them.
Nichole suggested that disparities could be addressed in communities of color through outreach and support efforts, especially when it comes to establishing trust and working to counter misinformation. She observed that information is often given to patients in a large data dump right at the beginning of treatment, when patients are scared and first starting to process what is happening to them. She suggested that providers find better ways to educate patients at various stages in the treatment process so they are better informed about their options, and urged other patients to educate themselves, correct disinformation, and encourage others in their community to learn more about transplants, especially options for living organ donation.
During the Q&A portion of the briefing, our panelists discussed financial barriers to living organ donation, better ways to address health disparities in communities of color, myths about organ donation that can prevent people from signing up as an organ donor, and ways providers can combat those myths.
As we continue our work to address health disparities in the U.S. and improve transplant access for all, AKF is grateful to our panel for sharing their expertise with our briefing audience on Capitol Hill and across the country.
Missed the live briefing? You can watch it for free here.
Want to join us in the fight against kidney disease? Sign up to become an AKF Ambassador today and join our mobile advocacy network by texting the word "KIDNEY" to 52886 or clicking here. These are great ways for you to let your elected officials know how important passing positive kidney legislation is to you!