NephCure Event Focuses on Kidney Disease Burden Among Black Americans

Raising awareness about APOL1

When Black Americans share their journey with kidney diseases, it can have a significant impact. Gillespie pointed out that 13% of the U.S. population is Black or African American, yet Black patients make up about 35% of patients in dialysis units. This gap must be addressed and include efforts to ensure that Black Americans are appropriately represented in dialysis trials, she said. In 2020, Black or African Americans comprised only 8% of study participants in clinical trials for drugs approved that year, according to the U.S. Food and Drug Administration (2, 3). “It is likely that APOL1 kidney disease may be contributing to the progression of kidney disease and the need for dialysis in a fair amount of African Americans,” Gillespie said. “If we can identify such patients with genetic testing and ultimately develop targeted therapies for APOL1 kidney disease, hopefully we can delay, and perhaps even decrease, the need for dialysis.”

The good news is that there are ongoing clinical trials for patients with APOL1 kidney disease. However, both a lack of awareness of clinical studies (including registries, observational studies, qualitative research, and interventional trials) and an understandable historical mistrust of the medical community mean that many patients might be missing out on genetic testing and clinical study opportunities, Gillespie explained.

That is why including Black leaders in the NephCure summit was so important. An event last spring illustrates the importance of these partnerships. NephCure had reached out to the Enon Tabernacle Baptist Church, a 12,000-member church in Philadelphia, PA, predominantly attended by Black congregants. Coincidentally, it was just a few weeks before the church was hosting “Know Your Numbers,” its 13^th annual men's health event for the surrounding community. After talking with NephCure representatives, the organizers added a kidney disease screening to the event, said Reverend Leroy Miles, a community health consultant and associate pastor of care and counseling at Enon Tabernacle, who also attended the DC NephCure event.

The church transformed a woman's bathroom into a urinalysis testing site. Medical student volunteers from the Perelman School of Medicine, University of Pennsylvania, conducted urine protein dipstick tests and gathered participant information. A team of nephrologists were in the next room to talk with men with abnormal results. If the physicians recommended follow-up screening, the church referred the men for a blood test with Labcorp, one of the event's sponsors.

The outreach is personal for Miles: “I am a Black man who is, at this point, beyond middle age at age 57.” The life expectancy of a Black man in Philadelphia is aged 69 years, he pointed out (4). Beyond his personal values, his church also believes strongly in this mission. “The church historically is about saving souls,” he said. “But what about life while you’re on Earth, and what about health and wellness? Health is wealth. Movement is medicine.” After Miles attended the NephCure event, he planned to work with his church to add an opportunity for the surrounding Black community to get APOL1 genetic testing.

Prioritizing genetic screening

One challenge in the medical community is that not many nephrologists are aware of how to screen for the APOL1 mutation, Mandayam said. “Every patient [who] comes to my hospital with a diagnosis of any kind of cancer gets their genetics done,” he said. Unfortunately, that is not yet the case in nephrology. “Nephrologists are aware that this disease exists, and there is a gene that people are looking at, but most don't seem to know enough about how to order the test, what to do, [and] how to incorporate it into their workflows.”

The APOL1 genetic screening test is not included in standard electronic medical record systems, which means physicians have to order the test separately. Mandayam orders the test for any patient of African descent with an unexplained kidney disease. He explains, “There has been a lot of hesitancy in the nephrology world doing things like this because historically there has been no treatment: Why use it and give you a name for your problem if I don't know how to treat it? But if we don't start somewhere, then we’ll never develop treatments for the named problems.”

It is also incumbent on nephrologists to encourage patient participation in clinical trials, said Mandayam, who is a principal investigator for the AMPLITUDE study (5). The trial is studying the effectiveness of the oral drug inaxaplin in patients with FSGS and the APOL1 mutation. The study is currently in phase 3. In preclinical studies, inaxaplin selectively blocked APOL1 channel function and reduced proteinuria. In Mandayam's phase 2a study, by week 13, the mean from the baseline urinary protein-to-creatinine ratio decreased 48% for participants treated with inaxaplin.

Improving health equity

At a NephCure reception the night before the summit, songwriter and music producer Brian Kennedy shared his story while playing the piano. Kennedy had a kidney transplant in 2017, after being diagnosed in 2010 with FSGS (without the APOL1 variant). “My brother Kevin gave me his kidney.… It was life-changing. I feel better now at 40 than I did in my 20s.”

Kennedy and his wife, Angelique Cinelu, a songwriter and creative director who also attended the NephCure event, co-founded Hits to Healing in 2020 (6). The nonprofit organization uses music to promote health equity and foster communication between health care entities and patients from marginalized communities. “Music is universal,” Cinelu said. “We’re both in music, and we thought that we could really use our creative tools to help break down some of these communication barriers.”

The couple, who are both Black, has each experienced medical situations in which health care professionals were not listening to them. The same year that Kennedy had his transplant, Cinelu gave birth to their first child. “I had a pretty traumatic birthing experience,…and I started to see that I was not the only person who looked like me who had these experiences in hospitals while giving birth.” She and Kennedy started to talk more about their medical care experiences.

“The common denominator was what we look like,” Cinelu added. “He and I come from very different backgrounds,…and we found that there was a similar treatment. And we also found, as we spoke about our experiences to a broader community, that people had the same experience. So we felt really passionate about trying to find a way to improve the communication between diverse communities and the medical world.”

It is critical that the health care community works on building better trust among patients, particularly with those from marginalized groups, Kennedy said. Collaborations like the ones NephCure is fostering can help make that happen. The couple want to use their experiences and connections in the music and entertainment industries to create accessible messaging for both sides. “What I find that is missing is not so much the connection to access the health, but the trust,” Kennedy said. “We’re trying to build a bridge of trust.”