JaMarcus Crews’ mom was diagnosed with Type 2 diabetes while she was pregnant with him, making him more likely to develop the condition himself. As Lizzie Presser reports at ProPublica, he worked hard to manage his health after being diagnosed as a teen. He did everything right, everything they told him to do. He watched what he ate. He exercised. He lost weight. He drove hours and hours, sometimes having to borrow gas money to attend life-saving dialysis after the disease progressed. His only mistake? Putting his trust in a system that was set up to fail him as a Black man with Type 2 diabetes.
A race-adjusted equation was also at play in JaMarcus’ case. The formula calculates kidney function by looking at what’s called “estimated glomerular filtration rate,” or eGFR. Creatinine is plugged into the formula along with age, sex and race. Doctors must note whether their patient is “Black” or not. By design, the equation assigns healthier scores to those who are listed as Black, because at a population level, a few studies found that this was more precise. With little investigation into why this might be the case, it was just accepted. That inflated score can mean a longer wait for a kidney because eGFR must drop to a certain level before you can start accumulating time on the transplant waitlist. The best-case scenario is to get a new kidney before needing dialysis, to avoid weathering the side effects of the machines. But those transplants are given on a first-come, first-served basis, and Black patients are less likely to get one.
The researchers and physicians behind the original formula, developed in 1999, wrote that Black patients had higher creatinine levels because “on average, black persons have higher muscle mass than white persons.” The assertion that Black bodies are different from all other bodies keeps company with generations of racist ideas that have infiltrated medicine, some of which were used to rationalize slavery. Researchers who developed the equation acknowledge that race is an imperfect variable, but even though they have updated the formula, they continue to adjust for race. The vast majority of clinical laboratories in the United States use such formulas today.
Dialysis is corporate healthcare on steroids: For-profit companies dominate the market, reap their revenues from Medicare and lobby hard against government reform. DaVita and Fresenius recently spent over $100 million to fight a ballot initiative in California that would have capped their profits, much of which are derived from taxpayer dollars, arguing that the initiative would lead to a shortage of doctors. They have lower staffing ratios and higher death rates than nonprofit facilities. And studies have found that patients at for-profit clinics are less likely to reach the transplant waiting list; they are 17% less likely to get a kidney from a deceased donor. Purnell, the Johns Hopkins epidemiologist, said the whole system is broken as long as corporate dialysis, which is financially incentivized to keep patients, is in charge of steering them to the better treatment of transplant: “Why would I walk into a Nissan dealership to tell me about a BMW?”
Dialysis facilities are responsible for transplant referrals, according to federal regulations, and JaMarcus’ DaVita social worker was assigned to educate and support him. When he was first assessed, a couple of weeks after he began, she wrote that he was suitable for referral and she would get him one when he got insurance. JaMarcus qualified for Medicare within three months. But more than a year later, he still hadn’t been referred.
By 2015, JaMarcus had a new DaVita social worker, Robbin Oswalt, who attributed the delay to a different prerequisite: “He is interested in getting a transplant referral if the Dr. approves after his wgt loss.” JaMarcus had lost 108 pounds since he started dialysis, and his body mass index had been hovering around the University of Alabama’s limit for months. At the time, he didn’t know that his height had been mistakenly entered into his DaVita records as 5-foot-11 — an inch and a half short of his actual height. Their incorrect number was then used to calculate his BMI, which made it look to his doctor that his weight was disqualifying, when it wasn’t.