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The Rev. Al Sharpton and singer Al B. Sure! were an unlikely pair of leaders at the Health Equity in Transplantation Coalition (HEiTC), but together they made major headway in getting Medicare to reinstate coverage of non-invasive post-transplant blood tests after months of advocacy.
For the last several years, blood tests that detected organ rejection were covered under Medicare and preferable to a surgical biopsy because they are non-invasive, can be done from home, and are less time-consuming. In March 2023, the U.S. Department of Health and Human Services announced sizable cutbacks for transplant patients and restrictions on these non-invasive tests. This was especially concerning for disproportionately impacted Black and Brown patients.
"Health equity is a treacherous mountain to climb, but today, Black and Brown organ transplant patients regained access to a blood test that helps determine their health outcomes," said Sharpton, founder of the National Action Network (NAN), in a statement.
Steven Potter, M.D., is the kidney and pancreas transplant surgeon at Medstar Georgetown Transplant Institute, professor of surgery at Georgetown University School of Medicine, and former Chair of the American Society of Transplant Surgeons (ASTS) Legislative and Regulatory Committee. He explained that when a patient receives an organ transplant, they have to take immuno-suppressive drugs and need to be carefully watched for signs of "allograft injury," or organ rejection. Prior to the advent of noninvasive molecular tests, organ rejection was monitored through "limited legacy tools" like checking for abnormal blood or urine tests, said Potter, which would lead to a sometimes painful and costly tissue biopsy.
"[A biopsy] it's uncomfortable, expensive, and it carries significant risk to the patient and their kidney," Potter said, pointing to the most common type of organ transplant. "There is a risk of bleeding, which may be massive, and risk of infection. So it's naturally not something patients want to undergo. And if you talk to kidney transplant recipients, they'll uniformly tell you how much they dislike biopsies and fear the idea that they might need a biopsy. Before the invention of these tests, we'd been doing things the same way for three decades, but the development of cell-free, donor derived DNA and gene expression profile testing allowed us to move us into a brighter future." The newer non-invasive blood tests allow earlier detection of organ rejection than legacy tests, like serum creatinine or urine protein levels, from previous decades. This advanced notice of injury or rejection in the transplanted organ is critical to saving lives and improving long-term health outcomes, said Potter.
The decision to limit access to these tests was made by a private contractor that reports to Centers for Medicare and Medicaid Services (CMS). In response to a public outcry and months of advocacy on behalf of transplant patients, CMS recently reversed the Local Coverage Determination (LCD) decision, which did not cover the post-transplant blood tests under Medicare.
"The decision to reinstate Medicare coverage for the use of surveillance blood tests is a positive step toward health equity," Sharpton continued, "and we thank CMS and Administrator Brooks-LaSure for returning to a Medicare coverage policy that aligns with the merits and facts presented by the transplant community. This decision ensures that all transplant patients, regardless of their socioeconomic status or geography, have access to the benefits of this critical tool."
Al B. Sure!, née Albert Brown III, received a life saving liver transplant in 2023 after suffering from a sudden coma for two months and not knowing why. He had multiple surgeries to repair a hematoma/hernia and dealt with a fungal pneumonia, sepsis, infected lymph nodes, a tracheostomy, was placed on a ventilator for 38 days, and had over 50 blood transfusions. Once recovered, he went on to co-found HEiTC alongside Sharpton and NAN communications advisor Rachel Noerdlinger. He currently serves as executive chairman of the HEiTC.
"As any organ transplant recipient will tell you, the path to recovery is a steep, uphill, and daily battle," Brown said. "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."
HEiTC actively engaged lawmakers, regulators, and other stakeholders to advocate for restored coverage of critical noninvasive blood tests.
"Our journey is far from over as we must now ensure that any future LCD reflects the voices of the entire transplant community before any coverage changes are implemented, but today's results certainly get us a step closer to achieving real equity in healthcare," the singer added.