On April 30, 2024, the American Kidney Fund (AKF) will be organizing the first annual APOL1-mediated kidney disease (AMKD) Awareness Day. This awareness day will be a time to help spread awareness about AMKD among the general public and in the medical field. This spectrum of kidney diseases disproportionately impacts people of West African and Central African descent.

Going forward, AMKD Awareness Day is going to be recognized in the final Tuesday in April and is intended to coincide with National Minority Health Month. The AKF was also on Capitol Hill on April 9 in order to share resources about this disease with both the general public and members of Congress. In order to learn more about this disease and AMKD awareness, Patient Worthy sat down with Mike Spigler, VP of Patient Support and Education with the AKF.

Mike says that overall, the general public doesn’t always understand that there are multiple forms of kidney disease, which can emerge from a variety of causes and triggers:

“The AKF has really tried to make patients aware of the importance of knowing the cause of their kidney disease…if you have a rare kidney disease, for example, and you go on dialysis or get a transplant, that could still result in you losing your transplanted kidney.” – Mike

He also explained that for many years scientists have known that African Americans developed kidney disease at an unusually high rate in comparison to other racial groups. They also are more likely to progress to kidney failure for reasons that weren’t entirely clear.

Socioeconomic factors and systemic discrimination are known to be contributing to the disparities, but research has revealed that certain APOL1 gene variants most prevalent in West and Central African populations are a major cause of kidney disease.

“Thirteen percent of Black Americans have both mutations of the APOL1 gene, and about 20% of those patients will get kidney disease.”

Some trials are currently underway that could have impacts on outcomes in AMKD. Mike hopes that this awareness day will help at-risk populations get informed about the condition and attempt to learn about their own family history. Furthermore, anyone with early signs of kidney disease is encouraged to get a genetic test in order to nail down the cause.

Additionally, people with confirmed AMKD are encouraged to reach out to AKF to share their stories.

To share your patient story and learn more about AMKD Awareness Day, click here.