NephCure Event Focuses on Kidney Disease Burden Among Black Americans

Melanie Padgett Powers
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At age 17, Joshua Albright took pride in eating healthy and staying active. He loved playing basketball with his friends in their Atlanta suburb. But one day, at his uncle's house, he and his cousins were experimenting with a blood pressure monitor. And to everyone's surprise, Albright's blood pressure was high, approximately 160/90. No one was quite sure what to do.

The results weighed on his mother's mind, so the next day, she called Joshua and said: “Your dad's taking you to the doctor. You need to go right now.” In the children's emergency department, after clinicians checked his blood pressure, Albright remembers two doctors looking really shocked at how high it was. The teenager was soon diagnosed with focal segmental glomerulosclerosis (FSGS), a rare, protein-spilling kidney disease.

Looking back, Albright had experienced frequent headaches. But it was in 2020, during a pandemic and at-home schooling, so he chalked it up to stress. A few months after his diagnosis, Albright was eligible for a clinical trial for an oral medication for patients with FSGS who were found to have the genetic variant of the apolipoprotein L1 (APOL1) gene from genetic testing. Patients of western or central African ancestry who have the high-risk genetic variant are at increased risk of kidney diseases. The gene mutation evolved in Africa to protect against a parasite that causes African sleeping sickness.

In the United States, it is believed that one out of every five people of African ancestry with the high-risk APOL1 genetic variant will develop protein-spilling kidney disease, said nephrologist Barbara Gillespie, MD, MMS, FASN, vice president and therapeutic head of nephrology at Fortrea (a company that provides clinical development and patient-access tools to the life sciences industry) and adjunct professor in the Division of Nephrology and Hypertension at the University of North Carolina School of Medicine, Chapel Hill.

Albright, now 20 years old, shared his story during the NephCure conference, “Addressing the Unequal Burden of Kidney Disease on Black Americans,” on September 19th in Washington, DC (1). “I share my story because I know I can be an advocate for a lot of people with rare diseases,” Albright said. “I’ve seen the impact that my story can have on others, and I tell my story to help other people and give an insight [into] what we go through.” NephCure funds research and provides support and education to people affected by kidney diseases.

The full-day summit brought together patients, physicians, and researchers. This conference was particularly unique because of the other stakeholders in attendance: leaders from the church, community, historically Black colleges and universities, and the entertainment industry. The event included Grammy-nominated rapper Freeway and a video message from National Basketball Association Hall-of-Famer Alonzo Mourning, who both shared their story about having kidney diseases. Georgia Senator Raphael Warnock sent a video message of hope and support. A highlight of the summit was a 2-hour audience discussion focused on demystifying genetic testing and articulating calls to actions.

“This was one of the most unique conferences I’ve ever attended,” said Sreedhar Mandayam, MD, MPH, MBA, FASN, nephrology professor and principal investigator at The University of Texas MD Anderson Cancer Center in Houston. “Patients—the people that actually deal with the problem—came up and spoke about their experiences … interspersed with physician scientists talking about how they discovered what they discovered and about new treatments coming up. It was very uplifting and very unique in that it was completely patient-focused, and the physician scientists played a supporting role.”

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 13th 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.”

Acknowledgments on behalf of Dr. Gillespie

Dr. Gillespie was honored to serve on the Steering Committee of the NephCure conference, alongside Reverend Leroy Miles (Enon Tabernacle Baptist Church); Kevin Mott, AAMS, CRPC (Edward Jones and NephCure board member); and two esteemed co-chairs: Keisha Gibson, MD, MPH, FASN (University of North Carolina School of Medicine), and Opeyemi Olabisi, MD, PhD (Duke University). This unique conference would not have occurred without the vision and leadership of NephCure, including Joshua Tarnoff (chief executive officer), Lauren Eva (executive vice president), Maurice Madden (director of stakeholder engagement), and Sarah Prince (manager of industry relations).