By Deborah Bailey
AFRO Contributing Editor
Dbailey@afro.com
Rev. Al Sharpton and recording artist Albert “Al B. Sure!” Brown don’t seem like the most likely partners in the fight for civil rights. While Sharpton, head of the National Action Network, is known for historic civil rights campaigns on behalf of Black Americans, Brown is best known for his series of top 40 and R&B hits, and more recently as host of “Love and R&B” on Urban One’s Reach Media.
But together, these men with a national coalition of health advocates, have scored a major win for transplant patients across the U.S. Working through the Health Equity in Transplantation Coalition (HEiTC), health advocates across the nation have successfully fought for the Centers for Medicare and Medicaid Services to reverse a rule banning coverage of a crucial blood test taken by transplant patients to detect the life-threatening condition of organ rejection.
Close to 100,000 people are waiting for major body organs and more than a million transplants have already been performed in the U.S. That means the Medicare reversal on post-transplant tests is a life-altering win, especially for Black and Latino transplant patients, said Sharpton.
Black organ transplant patients represent close to 30 percent of all transplant candidates on the waiting list, according to the U.S. Health and Human Services Office of Minority Health (OMH). The most frequently donated organs in order of transplant frequency are kidneys, livers, hearts and lungs, according to OMH.
‘’Our involvement in this major health issue is long overdue,” Sharpton said. “Life starts with our health. We (Black people) are getting ill earlier and earlier. This is a civil rights issue, so as a civil rights organization we had to get involved.”
Beginning in 2017, Medicare covered two tests that transplant surgeons use to monitor patients for organ rejection. Surgeons like Dr. Steven Potter, a Georgetown University kidney and pancreas transplant specialist and professor of surgery, use these tests on a routine basis to monitor patients for organ damage and rejection.
But in 2023, The Centers for Medicare and Medicaid Services (CMS) announced significant reductions in coverage for the post-transplant blood tests. Contractors who supply the tests to CMS, called Medicare administrative contractors or MAC’s, have the right to restrict access to the tests by Medicare recipients via a rule recognized by CMS called a local coverage determination or LDS, according to a spokesperson for CMS.
‘’The blood tests check for organ rejection [and] prevent patients from undergoing painful surgical biopsies to determine whether a transplanted organ is rejected by the body,” said Potter, who also supports the HEiTC Coalition. “These tests can detect possible problems long before patients have major symptoms.”
On a practical level, the tests can be administered at home.
“The tests save patients from losing a day of work or missing other essential commitments,” said Dr. Marsha Harris, New York University Langone Health colorectal surgeon and a HEiTC coalition member.
Sharpton, Brown and other health organization partners got to work this summer, forming a bi-partisan response to the CMS decision. Sharpton and former Republican House Speaker Newt Gingrich testified on Capitol Hill supporting Medicare coverage for the tests.
Brown, who underwent a liver transplant in summer 2022, is the executive chair of HEiTC and brings a new face to the disproportionate burdens Black transplant patients face. He embodies an urgency for Medicare to get back in the business of covering the costs of noninvasive post-transplant tests.
“Any organ transplant recipient will tell you the path to recovery is a steep, uphill and daily battle,” said Brown about his experience.
According to University of Virginia Health, acute organ rejection happens in the months following a transplant while chronic organ rejection can happen any time after a year.
In addition to HEiTC’s Capitol Hill testimony, 14 members of Congress and 24 leading transplant surgeons sent a letter to CMS administrator Chiquita Brooks LaSure urging her to restore Medicare coverage of the post-transplant tests.
“What’s less known is that this journey poses even greater risks for Black Americans because we are biologically more likely to experience organ rejection, and are disproportionately represented in the transplant population,” Brown said at a Congressional Black Caucus (CBC) event celebrating Medicare’s pending restoration of coverage for the tests.
On Aug. 16, CMS issued a statement announcing the decision to withhold Medicare coverage for post-transplant tests would not be finalized. In part the statement read, “In response to public comments and upon further review of the evidence, the MACs are not finalizing the proposed LCD issued on August 10, 2023.”
At a recent CBC event, Sharpton, Brown and other transplant supporters nationwide gathered to proclaim the fight is not over.
Once the Medicare decision is finalized, HEiTC is poised to begin a campaign targeting the root causes of the gross inequities between Black, Latino and White patients when it comes to the chronic diseases that lead to transplantation in the first place.
Poorly controlled diabetes is the leading cause of kidney failure, a condition impacting Black Americans at a rate three times greater than White Americans, according to the National Kidney Foundation. Kidneys are the number one organ on the transplant waiting list, where close to 30 percent of the waiting candidates are Black, according to the HHS – OMH.
Reporting on this story is through the support of a journalism fellowship from the Gerontology Society of America, The Journalists’ Network on Generations, and the Commonwealth Fund.
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