The Kidney Equity Imperative

I wanted to add to the recent community efforts during National Kidney Month in March and National Minority Health Month this month, and share my reflections on why we need to keep health equity at the forefront in rare disease.

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In February, at Travere, we convened a panel of people living with or caring for those with rare kidney disease (RKD) to share their experiences as a part of Black History Month. Their powerful stories highlighted the challenges of diagnosis, the importance of further education and awareness, and advocating for yourself as a patient or caregiver.

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One story shared in that conversation struck me and so many of my colleagues at Travere as a powerful example of why it’s so important that together we continue to elevate the topic of health equity.

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Steven, a care partner for his wife Yulanda, who lives with IgA nephropathy, shared she was diagnosed with the rare kidney disease in 2003, although suspected since 1994. By 2006 her kidney function was declining rapidly, when she changed her nephrologist and managed her declining kidney function through medication and diet. She was subjected to grueling dialysis (hemo and peritoneal) since October 2022. This was the same timeframe in which she was placed on the United Network for Organ Sharing (UNOS) transplant list.

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At the time of our conversation with Steven in February, he shared he and Yulanda had received a letter in 2023 from the transplant team advising Yulanda to advocate for herself. The letter, to their disbelief,revealed a years-long practice of inequity in treating kidney disease. It read: “For many years, the national standard of care was to apply a race-based eGFR calculation for black patients, often, making it look on paper they had better kidney function than they did. The medical community has now come to understand that this practice may have unfairly disadvantaged some black patients’ wait times on the UNOS transplant list.”

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According to an article from the National Kidney Foundation (NKF) published a few years ago on this topic, “race was originally included in eGFR calculations because clinical trials demonstrated that people who self-identify as Black/African American can have, on average, higher levels of creatinine in their blood. It was thought the reason why was due to differences in muscle mass, diet, and the way the kidneys eliminate creatinine. Since a patient’s race is not always used when laboratory tests are ordered, laboratories used different eGFR calculations for African American and non-African American and included both numbers in their lab results.”

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A new non-race-based test had gone into effect in July 2022, and Steven and his wife were encouraged to re-submit their lab results. “We gathered lab results all the way back to 2017, and re-submitted them. Her previous start date on the UNOS transplant wait list was in 2022 and after the update in policy and resubmitting her results, the date was changed to 2017. That’s a difference of almost six years.”

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And, we’ve recently heard that Yulanda has gotten the transplant she had been waiting for and is doing great.

There has been so much work over the past few years that organizations such as the NKF, the American Society of Nephrology (ASN) and others have done to champion this change, including the creation of a task force that reviewed the use of race in eGFR and announced a new race-free calculation.

This work became very real to us all at Travere as we heard Steven share his family’s experience. And,it’s why we’ll continue to raise awareness about the great work done by organizations like NKF, ASN, AKF, IgAN Foundation, NephCure, the Rare Disease Diversity Coalition, and so many others.

My ask is that we continue to elevate health equity and share examples and experiences of inequity by listening to the patient community and supporting important legislation, such as H.R. 6790, The New Era for Preventing End-Stage Kidney Disease Act, a bill currently before the US Congress. It’s the only way we will be able to continue to bring about change so that Yulanda, and so many others living with RKD, get the treatment and care they deserve.