Thanks to a 2009 medical breakthrough, researchers could be on the precipice of answering one reason why Black Americans are disproportionately diagnosed with kidney failure, and offering a solution to the issue. That discovery, doctors and researchers told TPM, may not have been possible without decades of analysis of federal race and ethnicity figures collected on every American citizen diagnosed with kidney failure. Now, the Centers for Medicare and Medicaid Services, or CMS, have ceased collecting that information — data swept away in President Donald Trump’s purge of so-called diversity, equity, and inclusion initiatives.
Dialysis is the closest thing to universal health care America has. Anyone diagnosed with end-stage renal failure who has paid into Medicare is eligible for treatment coverage, regardless of age. As a result, the federal government has become the chief collector and keeper of patient information, from race and gender demographics to when a patient was first diagnosed with kidney failure.
But CMS, under the leadership of Dr. Mehmet Oz, removed questions about a patient’s race and ethnicity in June. Advocates said there’s no easy, intuitive or public way to replace the data, which has been used for everything from identifying trends to allocating treatment resources to underserved populations.
“I have often been asked the question of ‘why are you a nephrologist?’” said Dr. E. Jennifer Weil, nephrology professor at the Emory School of Medicine. “And I’m like, well it’s the only socialized medicine program in the states.”
In August, three major nephrology groups sent a letter to Oz urging him to reinstate the race and ethnicity questions. They haven’t received a response, advocates told TPM.
The loss of race and ethnicity data “would hinder public health research, health services planning, and the design of targeted interventions to improve kidney health outcomes for all Americans,” the letter states.
Trump in his second term has launched a sweeping effort to eradicate racial equity and gender equality from the federal government, and targeted similar efforts in the private sector, too. From major companies rolling back their DEI commitments to appease the president, to the federal government purging the recognition of Black soldiers at Arlington Cemetery, the Trump administration has eviscerated efforts to address systemic racism and sex and gender bias, purportedly out of adherence to meritocracy.
But health care researchers, doctors and advocates told TPM, cannot ignore these kinds of disparities.
“I think, unfortunately, a lot of things have been lumped together,” Dr. Deidra Crews, a nephrologist, professor, and former president of the American Society of Nephrology, told TPM. “There’s a big difference between collecting information for the purposes of knowledge, and doing what I believe [the Trump administration] primarily opposes[s], which is any sort of selection of individuals for opportunities based upon race or ethnicity.”
CMS did not respond to TPM’s requests for comment.
A Race Data Change That Contradicts Trump’s Own Goals
Activist Shep Glazer in 1971 rolled a “bulky but portable” dialysis machine onto the floor of the House Ways and Means Committee, according to an Associated Press article from the time, to show legislators what he had to do to stay alive, and humanize the cost of the treatment. A 1971 Newsday report said Glazer’s dialysis cost $26,000 over three years, equivalent to roughly $212,180 today.
“We live in constant terror that if these treatments are taken away from us because our money has run out, death will come in a matter of weeks,” Glazer said at the committee hearing.
By 1972, Congress passed legislation guaranteeing Medicare coverage for every American diagnosed with end-stage renal disease. The impetus behind it, Weil said, was to save American lives.
“We’re just gonna let people die?” Weil said of the 1970s incident. “And Congress at that time voted to establish the United States Renal Data System, which enters people into the program that pays for the dialysis.”
The USRDS is the database in which patient information is collected and stored using a medical form called the CMS 2728. Typically administered at a medical facility, patients are interviewed by facility staff members who ask a set list of questions. Before the Trump administration’s changes, the 13-page form included questions about race, ethnicity, sex and gender, along with comorbidities and whether a patient was informed of organ transplant options. Most of those questions remain, along with some additional ones pushed for by nephrology advocates.
“We’re still giving dialysis to anybody who needs it,” Weil continued. “But the 2728 form was changed.”
Race is used in nephrology research to find and understand diagnosis incidence trends. It’s used to help allocate resources to underserved dialysis centers and populations.
The data was used to investigate why Black people account for 13% of the U.S. population, but make up 33% of end-stage renal failure patients, according to the American Kidney Fund. A decades-long inquiry led researchers to identify APOL1, a gene prevalent in West African people to help defend against sleeping sickness, a disease that doesn’t exist in the U.S., as one potential factor for the disparity. As a result of the breakthrough, Vertex Pharmaceuticals is conducting human clinical trials of a drug developed to target the gene and intended to help reduce the risk of kidney failure in African Americans. The Phase 3 study is ongoing and is administering the drug alongside a placebo to confirm its efficacy, meaning the drug may soon become widely available.
Race is also important to help advance one of Trump’s marquee health goals from his first term: increasing home dialysis.
In July 2019, advocates celebrated Trump’s executive order on “advancing American kidney health” which included, among other goals, increasing the number of patients receiving dialysis at home instead of at a dialysis center.
“Black and Hispanic patients are less likely to even be offered those therapies but they’re also less likely to adopt those therapies,” said Crews.
Removing federally-tracked race data “definitely seems to run counter to that,” Crews said later. “It makes it so we can’t track whether we’re achieving what seemed to be a goal of [Trump’s administration].”
Removing Race is Not ‘What’s Best for the Country’
Weil, who works at the Atlanta Veterans Affairs Medical Center, is one of thousands of VA nephrologists working on the Vertex clinical trial aimed at targeting the APOL1 gene to help reduce the risk of kidney failure in African Americans. She cares first, she said, about the issue of racial equity in a multi-racial America. But beyond that, Weil and Crews said the Phase 3 clinical trial wouldn’t have been possible without data on patient race and ethnicity collected by the federal government for about half a century.
Vertex did not provide comment to TPM, instead referring questions to an unrelated kidney health advocacy group.
“I’m horrified,” Weil said. “I’m horrified, and it feels to me like a personal blow. Even though I’m not Black, it feels like a personal blow to me because this is how I’ve built my research interests.”
Weil believes Medicare’s coverage of kidney failure treatment is “probably the most expensive entitlement that the government funds.” Dialysis can cost more than $70,000 a year for uninsured patients.
Joseph Vassalotti, a nephrologist and chief medical officer at the National Kidney Foundation, said collecting race and ethnicity demographics, and using that data to support research and resource allocation, is “in the public trust.”
“My goal in communicating with you is to do what’s best for people with kidney failure and do what’s best for the country,” Vassalotti said. “I don’t think that removing race in the demographics is consistent with what’s best for the country.”
