By Reginald Williams
Special to the AFRO
During National Kidney Month, Baltimore-based abstract painter Charles Mason III authored an open letter to the community sharing his journey and seeking the aid of a live kidney donor. In addition to the kidney, he will need to fund the portion of the transplant not covered by his health insurance.
(Courtesy photo/ Instagram)
Charles Mason III is one of approximately 101,000 American citizens – and among roughly 27,000 African-Americans – awaiting a kidney transplant.
On average, 17,000 recipients receive kidney transplants annually. Blacks, however, proportionately receive even fewer kidneys.
All the usual social determinants suspects play a critical role in African-Americans reduced opportunity to find kidney donors:
-Lack of access to care,
-Poor care coordination,
-Lack of suitable donors,
-Lack of funding, and
-Persistent medical mistrust
While African-Americans develop kidney disease at almost four times the rate of White people and are
diagnosed with end-stage kidney failure at 2.5 times the rate of White people, they have a decreased chance of getting a lifesaving organ. According to the National Kidney Foundation, Black people wait an average of 64 months to get a transplant, while White people secure a new kidney in 37 months.
One reason for the extended wait is due to an inaccurate estimated glomerular filtration rate (eGFR)
test used to assess a person’s kidney function. The test evaluates how efficiently a person’s kidneys remove creatinine, a waste product filtered out of blood. The eGFR equation reports a score based on measured creatinine levels while also considering a patient’s age, gender, and race. The race-based methodology used to calculate test results for Black and non-Black patients played a significant factor in who is placed on the donor list.
A 2019 paper published in the Journal of the American Medical Association by nephrologist Dr. Nwamaka Eneanya, an assistant professor in epidemiology and in renal-electrolyte and hypertension at the Perelman School of Medicine, shined a spotlight on the issue.
“The researchers who developed these equations discovered that Black study participants had higher creatinine levels compared to white study participants — despite having similar kidney function,” Dr. Eneanya explained. “The researchers proposed that the reasons for their findings were due to Black people having more muscle mass than white people. Since people with more muscle mass make more creatinine, they concluded that Black patients’ eGFR scores should be adjusted with a multiplication factor. Clinicians have been performing this ‘race correction’ for more than 20 years, so Black patients are routinely assigned higher kidney function than those of other races.”
Because the eGFR overestimated Black patients’ kidney functions, it resulted in their delay in being placed on a donor’s list.
Dr. Eneanya championed a change in the use of the eGFR test, and the National Kidney Foundation and American Society of Nephrology have also advocated for a switch to race-free equations in calculating kidney function.
To mitigate the damage of the biased testing, more than 14,000 African American candidates were moved up on the priority waitlist between January 2023 and mid-March 2024. Candidates had their wait time reduced by almost two years. According to the Organ Procurement and Transplantation Network, approximately 3,000 patients received kidneys.
“When I found out they were messing with the numbers [kidney level function from the eGFR test], I no longer wanted to hear how in medicine everything is on the up and up. No. You’re lying,” said a passionate Mason. “Everything is not on the up and up, and y’all [medical professions]need to be scrutinized more. We need better checks and balances for a lot of systems in this country.”
The 33-year-old Baltimore artist was diagnosed with chronic kidney disease when he was 10 years old. Sitting in a doctor’s office on Sept. 11, 2001, watching two commercial airliners crash into the World Trade Centers, Mason – not understanding the dynamics of what he witnessed – learned that he, too, would suffer a crushing tragedy.
On the unforgettable day that shook America, Mason felt his world collapse. He visited the doctor, believing he had two broken ankles because of excessive swelling. Instead, he learned his swollen feet were the result of edema from poor kidney function, and Mason was diagnosed with primary focal segmental glomerulosclerosis (FSGS), a chronic kidney disease that affects about 40,000 people annually. Primary FSGS has no known cause.
“They tested me for everything, like glaucoma, diabetes and other auto-immune diseases and conditions because my illness came out of nowhere,” explained the abstract painter. “Till this day, to my knowledge they don’t know where it comes from.”
Despite being eligible, Mason isn’t on a donor list. He is young, consumes a regime of medicine that keeps his kidneys filtered and maintains a healthy lifestyle. However, the University of Maryland of Baltimore County fine arts graduate is cognizant that he needs a donated kidney sooner than later.
“I’m thankful for not having to be on a list,” Mason said. “I’ve been able to find a regime of medicine that has really helped me. I’m thankful for being in half-decent shape health-wise. I’ve taken care of my body. All of that has a lot to do with me being stable. For a long period of time, even for years, my kidney function levels stayed stagnant. But as you continue to live, those levels will decrease.”
The Baltimore native hopes to find a living kidney donor.
“Right now, I’m aiming for, praying for, hoping for a living donor. With a living donor versus being on a list and waiting for someone’s kidney, chances are higher that it will be a healthier kidney. I’ll be able to have it longer, and it is less likely to have certain diseases,” Mason said.
According to Mason, living donors provide a better prospect for a successful transplant. Living donors must undergo a more rigorous screening process. Medical experts say that recipients of living donors generally experience better outcomes. A kidney with metabolic issues like high blood pressure or diabetes is not a good candidate for transplants.
“They scrutinize it [a transition kidney]to a degree but it’s different,” explained Mason. “With a living donor, they want the person to be as healthy as possible. They scrutinize them really well because you’re getting a foreign organ into your system. They don’t want someone who is pre-diabetic to donate an organ.”
During National Kidney Month, Mason authored an open letter to the community to increase his odds of finding a suitable donor, sharing his journey, and asking for help. In addition to the kidney, he will need to fund the portion of the transplant not covered by his health insurance.
“This might be one of the biggest asks I’ve ever had to do, that is, to ask you and anyone you may know that might be interested if they’d be willing to donate a kidney to me,” Mason said. “Spread the word ‘cause if it’s one thing for sure, I can’t do this alone and I know we’re not meant to do any of this life alone.”
