Letter to Hon. Xavier Becerra, Secretary of Health and Human Services - Plaskett and Kelly Lead CBC Letter to HHS Secretary Urging a Focus on Sickle Cell Disease Treatment

Letter

Dear Secretary Becerra:

Congratulations on your recent confirmation as Secretary. We are proud of you and welcome our continued governing partnership as you lead HHS. As Members of the Congressional Black Caucus, we look forward to working with you to address longstanding health inequities and disparities impacting our communities.

As legislators who share a deep commitment to ending the suffering endured by the more than 100,000 Americans currently living with sickle cell disease (SCD), we believe we are at the threshold of being able to deliver on the promise of the cure for SCD. As you well know, SCD is a severe, life shortening disease that impacts predominantly people of color -- especially African Americans. More than 40% of SCD patients are covered by Medicaid.1 Individuals living with SCD experience severe pain, anemia, organ failure, stroke, and infection; and in one recent study, more than 30% of those diagnosed experienced premature death.2 Another recent study estimates that the life expectancy for individuals with SCD is 54 years.3

In the more than 100 years since SCD was discovered, the SCD community has received relatively little attention and few resources. For decades, these individuals have suffered due to racial discrimination in the health care system in addition to life-threatening disease burden. Individuals living with SCD encounter barriers to obtaining quality care and improving their quality of life. These barriers include limitations in geographic access to comprehensive care, the varied use of effective treatments, the discrimination of being labelled "drug seekers" when seeking care during a crisis, the high reliance on emergency care, and the limited number of health care providers with knowledge and experience to manage and treat sickle cell disease.

Though long overlooked, there is now more awareness of, and attention being paid to SCD. In the last two years, several SCD therapies have come to market, providing patients and their physicians with new therapeutic options to manage and treat their conditions. Furthermore, with several rapidly progressing gene therapies on the horizon, we are now on the verge of a potential cure.4 Although these investigational approaches are still being evaluated in clinical trials, such therapies have the potential to revolutionize the practice of medicine and transform the lives of individuals living with SCD.

However, we are troubled that access to these medicines is anything but guaranteed for the patients who would benefit most from them. At present, our health care system is poorly equipped to ensure that patients will have meaningful access to these therapies upon their approval, particularly if they are in the same price range as other gene therapies. The gaps are most glaring within the Medicaid system, but exist for Medicare beneficiaries and patients enrolled in private coverage as well. We believe the federal government has an essential role to play, working with state Medicaid programs and the broader health care community, to proactively address these barriers.

Our aim is to ensure meaningful access to these potentially curative SCD therapies on day one of their approval by the Food and Drug Administration. To achieve this goal, we seek your partnership in identifying and breaking down barriers that stand between sickle cell patients and these potentially curative therapies on the not-so-distant horizon. In support of this goal, we encourage the Biden administration to promptly convene a multi-stakeholder dialogue, including patients, caregivers, physicians, and hospital administrators to begin working towards policies that will support equitable and appropriate access to innovative SCD therapies. We ask that the options to be considered not only address access to potential future curative treatments, but also address the bias that this population continues to face from the health care system.

Working together, we must tackle these challenges. Patients are counting on us.

Sincerely,