A New Era of Change for Communities of Color Disproportionately Impacted by Rare Kidney Disease

A few weeks ago, I was privileged to serve on a panel at the 2022 National Minority Quality Forum Summit on Health Disparities and Congressional Black Caucus Spring Health Braintrust meeting. The topic, “Rare Diseases: It's Time to Address this Health Equity Crisis,” gave voice to health equity issues in rare disease care. Molly Ryan of Global Blood Therapeutics spoke about groundbreaking work in sickle cell disease. Howard Mosby of the HEAL Collaborative spoke about progress to advance culturally relevant health education in communities of color. I spoke about rare kidney disease.

FSGS and IgA nephropathy are rare progressive kidney disorders that often lead to kidney failure -- disproportionally so in Black, Asian and Latinx populations. Travere is committed to try to change these outcomes through innovation, community partnership, and advocacy. As a nation, there is more that we can be doing to effect change for communities disproportionately affected by rare kidney disease and I believe we’re at the forefront of a new era.

In late 2020, members of Congress, including the current Congressional Black Caucus Health Braintrust Chair, participated in the first-ever rare kidney disease policy roundtable co-led by Travere which outlined the urgent needs of rare kidney patients and their families. Recommendations of the roundtable included incentivizing nephrologists to serve communities of color, empowering families with patient education and the ability to voice perspectives on their care, building trust, directing resources to the community level, and boosting research particularly in the area of disease progression.

The roundtable recommendations became the basis of the recently introduced bill titled New Era of Preventing End Stage Kidney Disease Act, H.R. 7506. The bill includes important provisions that would  ensure that families of color are not left behind as novel therapies for kidney disease become part of healthcare. 

Specifically, the proposed legislation would provide for:

·       Community partnership grants for patient education and referral to trusted care

·       A new “Communities of Color Service Program” with incentives for nephrology fellowships in disproportionately affected communities, as well as provider education

·       Research that targets why people of color with kidney disease often progress to dialysis so much faster than white Americans, including factors such as social determinants of health and treatment patterns

The Rare Disease Diversity Coalition best described what rare disease patients of color face in the United States: "as rare disease patients, they strive to be included (and not forgotten) in healthcare; and, as people of color, they fight daily for equity—against the reality of historic bias and its lingering disparate social, economic, and health effects."

The proposed New Era of Preventing End Stage Kidney Disease Act can help turn the tide in outcomes for rare patients of color. I am humbled by the work of NephCure Kidney International, patient advocates, roundtable participants, Congressional Rare Disease and Black Caucus members to make the lives of rare kidney disease patients a legislative priority.

There are also additional innovative components to the proposed New Era of Preventing End Stage Kidney Disease Act that would benefit people living with rare kidney disease; stay tuned for more.

Together we will drive the change we hope to see for all people living with rare kidney disease.