Fighting for Equity for Black and Brown Transplant Patients

By Dr. Marsha Harris

Any doctor will tell you that the ability to expect the unexpected and adapt accordingly is crucial, a lesson I’ve learned through my experiences as an athlete, a surgeon, and now, as a transplant recipient.

However, some developments are so unexpected and significant that they are particularly hard to overcome. This has been vividly demonstrated over the past year due to a decision by a private contractor for the Centers for Medicare and Medicaid Services (CMS) to cut back Medicare coverage for a critical, life-saving blood test. This test is indispensable to the transplant community; it allows for the early detection of organ rejection before the patient exhibits visible signs or symptoms. Notably, the test is easily obtainable, can be performed at regular intervals, done in remote areas, and even conducted at home.

The situation took a turn in March 2023 when CMS ruled that Medicare would only cover this blood test if the patient’s doctor could demonstrate that the patient was showing signs of rejection and that the blood test could serve as a substitute for a biopsy. This means that physical symptoms such as fever, pain, or feeling generally unwell must be present for the test to be covered under Medicare. This change introduces a significant delay in the recognition of rejection, which may make it exceedingly difficult to save the transplanted organ, a truly precious gift.

This decision has profound implications, particularly alarming to me both as a surgeon and as a Black woman who underwent a kidney transplant four and a half years ago. It was this decision that propelled me to join the Health Equity in Transplantation Coalition (HEiTC). This coalition was formed by Executive Chairman Al B. Sure! and Senior Advisor Rev. Al Sharpton because they saw, as I do, that this is as much an issue of equity as it is one of policy. Since then, HEiTC has been working tirelessly to advocate for the overwhelmingly Black and brown transplant recipient population who are disproportionately affected by the lack of coverage for this crucial testing. We have called upon CMS as well as the Biden Administration to reverse these changes and rectify the disadvantage imposed on an already vulnerable group of transplant recipients.

The anxiety associated with potential organ failure is a significant burden for all transplant recipients, exacerbated for those of us with extensive medical knowledge and expertise. It is especially acute for Black Americans, who are biologically more likely to experience organ rejection. The initial coverage decision by CMS in 2017 to support these tests, and its subsequent reauthorization four years later, provided a significant measure of relief. However, the introduction of the requirement for symptoms warranting a biopsy by MolDX, the contractor, has reintroduced a considerable degree of uncertainty and stress.

Additionally, this CMS decision directly contradicts the principles of preventative healthcare, which emphasize early detection and treatment. A rare admission by CMS recently acknowledged that the March restrictions caused considerable confusion, leading to a substantial decrease in the number of tests ordered in the following months. Doctors canceled many scheduled tests due to uncertainty about the coverage, creating further disruption and anxiety within the transplant community.

The confusion continues to persist. A new “Billing Article” issued by CMS on the same day failed to clarify whether coverage is still contingent upon the potential need for a biopsy, leaving many questions unanswered. Over a year has passed since these changes were implemented, and the transplant community still lacks clear guidelines and support.

As a doctor, a transplant recipient, and a Black woman, I find this lack of clarity and support from CMS deeply troubling. My personal journey through kidney failure and transplantation has shown me the critical importance of consistent, accessible medical care and the necessity of early detection tests. Yet, those in the transplant community relying on Medicare face increased risks as they must now wait for undeniable physical symptoms of rejection before receiving coverage for crucial testing.

Today, I renew my call to our elected officials and healthcare policymakers to urgently address these issues. We need to ensure that all transplant recipients have access to necessary tests that can detect early signs of organ rejection. We know organs are precious and in limited supply; reducing access to essential tests is not only counterproductive but also endangers lives.

The transplant community, including recipients, donors, their families, and their healthcare providers, deserves clear answers and effective policies that support their health and well-being. They need assurance that the tools necessary for early detection and treatment of organ rejection are readily available and covered by Medicare. It is imperative that we address these inequities and restore comprehensive coverage to save lives and support those at their most vulnerable. 

Dr. Marsha Harris is a New York City-based colorectal surgeon and kidney transplant recipient.