APOL1-mediated kidney disease does not have a face. It is a gene-related condition that can impact a Black person from any background, from a stoic grandmother to a vibrant teenager. There are many occasions where it does not reveal itself until it is too late.
Black Health Matters Harlem Week Health Summit welcomed patient advocates and healthcare professionals to discuss the importance of sharing information about APOL1-mediated kidney disease. Kemi Williams, PhD, MBA, described the disease’s relationship with the Black community.
“This is a rapidly progressing chronic kidney disease that disproportionately affects people of West African ancestry, particularly African Americans,” she said.
“Knowledge and awareness of the disease is very low,” she added. “We’re hoping to change that today.”
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Most of us who have kidney disease don’t know it.
Daryl O. Crenshaw, MD, noted the horrific impact of the limited awareness. “We understand now that about 37 million Americans have kidney disease, but the caveat is that most do not know they have it,” he said.
“At least 50 percent of Black Americans have at least one of the APOL risk variants, and having two of the APOL risk variants increases your chance of developing kidney disease.”
Kidney disease can lead to serious complications like kidney failure. “African Americans develop kidney failure at rates 4–5 times higher than Americans of European descent,” according to Trends in Endocrinology and Metabolism.
Joshua Albright discovered his kidney disease by accident.
Patient advocates and brothers Joshua and Jorden Albright shared their family’s experience with APOL1-mediated kidney disease.
Joshua accidentally learned about his kidney issues when visiting a family member impacted by kidney disease. “My aunt had given a kidney away to another family member, and we stopped by her house basically just to check on her, and she had a blood pressure machine out so she could check her blood pressure, and my sister and my cousins were playing around with the blood pressure machine. They put the cover on my arm, and my levels were extremely high,” he said.
It didn’t bother him much. His youth deceived him into believing it wasn’t a big deal. “At that time, I was 17, turning 18. I couldn’t care less what my blood pressure said, to be honest. I was trying to go see what the plan was that night with my friends,” he said.
His mother and doctor took it seriously. “My mom actually reached out to my primary care doctor, and they let her know that I should be rushed to urgent care just to get a follow-up kind of,” said Joshua.
“Shout out to all those mothers and sisters out there that are being the healthcare advocates and warriors within their families, pushing them to get a test,” interjected Williams.
After discovering that his brother had the APOL-1 gene variant, Jorden got tested as well, and he had a different one.
Following his brother’s diagnosis, Jorden was diagnosed as well. The family was attuned to the risk. “I’m very, very blessed that my brother was diagnosed,” he said. “We learned that Josh had the G1 variation. I had the G2.”
How Joshua made clinical trial participation work while a college student.
Joshua was open about his decision to participate in a clinical trial. One reason he didn’t hesitate was that there were concerns about his privacy as a college student and his quality of life. He believes it is essential to focus on the patient’s life outside of their medical concerns in clinical trials. “I was diagnosed right before college. They gave me the flexibility to be able to coordinate at-home visits,” he said.
“I remember when I was in college, I was a little bit…I felt like I looked at my kidney disease as a weakness. I didn’t want everybody in the dorms knowing I had a nurse coming to check on me, so I would actually go all the way home to my parents’ house, and they would have a nurse meet me there. I’d have at-home visits.”
“It” puts the patient first.”
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