Policy Change Required to Ensure Equitable Treatment for Sickle Cell Patients
by Michael A. LeNoir, M.D.
As founder of the African American Wellness Project (AAWP), I have dedicated my career to improving health outcomes for our community and confronting the disparities we face. The Centers for Disease Control and Prevention (CDC) reports that racism in healthcare is a fundamental cause of our health inequities, contributing to our high rates of chronic illness and a lower average life expectancy.
Nowhere are these disparities more prevalent than in sickle cell disease. Sickle cell impacts 100,000 Americans, most of whom are African American. 1 in 13 African Americans carry the sickle cell trait, a much higher rate than any other U.S. ethnic group. I have personally lost two family members under the age of 40 years old to sickle cell disease in the past few years. This brutal disease causes severe and unpredictable chronic pain spells, stroke, vital organ damage, anemia, vision problems, and a life expectancy of only 54 years.
Sickle cell is the most common inherited blood disorder in the United States. Yet due to systemic racism in our healthcare system, the sickle cell community has seen little attention, inadequate research funding, and minimal pharmaceutical investment. There are currently only four drugs on the market to treat sickle cell, even though it was discovered a century ago.
Lack of research and attention has created a severe knowledge deficit in sickle cell care, leaving patients to basically fend for themselves. Very few medical professionals are knowledgeable enough about the disease to be comfortable treating it. This means that instead of going to primary care providers or specialists for treatment, most sickle cell patients must rely on the emergency room for primary care. The CDC Foundation reports that sickle cell patients have the highest rate of returning to the hospital within 30 days of discharge compared to other health conditions and often face doubt and stigma from providers when asking for medication to alleviate their chronic pain.
Thankfully, after decades of little progress, the scientific community is on the verge of new developments in cell and gene therapies that could potentially cure this awful disease.
However, the very patients that need these therapies may not even have access to them. 42 percent of sickle cell patients must rely on Medicaid, given that many do not live long enough to qualify for Medicare and their symptoms make it nearly impossible to secure a job with benefits. Medicaid coverage varies dramatically across state lines, leaving gaps and inconsistencies in coverage for patients.
Clearly, we need a coordinated federal strategy to address these problems, and I’m proud to see African American leaders across the country showing up for the sickle cell community and demanding change. Last summer, the Congressional Black Caucus (CBC) sent Health and Human Services (HHS) Secretary Becerra a letter bringing attention to sickle cell and asking that the federal government convene a stakeholder group to advise on ensuring sickle cell treatments are accessible to all patients. On top of that, the National Black Caucus of State Legislators (NBCSL) just passed a resolution reinforcing the CBC’s asks and urging state Medicaid programs to reevaluate their coverage to make sure they are adequately meeting the needs of sickle cell patients.
The sickle cell community is finally receiving some of the attention it has lacked for so long, but now we need action. State and federal leaders must use this newfound momentum and enact meaningful policy changes to ensure treatments for sickle cell are accessible to all patients.
In loving memory of Chaznee and Bryan Brown.