October 11, 2021

The Honorable Xavier Becerra

Secretary

Department of Health and Human Services

200 Independence Avenue, Southwest

Washington, D.C. 20201

Dear Secretary Becerra:

MTS Sickle Cell Foundation is a national sickle cell disease (SCD) organization that works to raise awareness, support, and sensitivity surrounding this global health issue. MTS Sickle Cell Foundation provides socioeconomic support to families impacted by SCD and partners with organizations who not only have a deep understanding of SCD issues but are working to advocate for the betterment of sickle cell disease patients and their families.

We are proud to partner with the undersigned advocacy groups and organizations, many of whom represent various sickle cell disease communities across the country, to respectfully request that you bring together a broad and diverse group of stakeholders in the sickle cell disease community to focus on expanding access to treatment.

The most common inherited blood disorder, SCD is a life-threatening chronic illness that affects about 6.4 million people around the world, with an estimated 300,000 babies diagnosed each year. In the United States, SCD affects roughly 100,000 Americans, occurring disproportionately in Black and Brown populations with 1 in 365 Black and African Americans births and 1 in 14,000 Hispanic Americans births. As a result of systemic racism and health inequities, SCD has not gotten the robust attention it deserves in terms of funding for research, access to quality care from diagnosis and beyond, education, and overall support. This has led to a very marginalized community that struggles frequently in and out of the healthcare system due to a host of complications that often begin months after birth. Complications such as chronic pain crises, infections, stroke, acute chest syndrome, ulcers, organ damage, blindness, and more, making the lives of those living with SCD approximately 40 years shorter than the average U.S. adult lifespan.

With the advent of new and potentially lifesaving therapies recently approved and under development, including gene therapies, it is more important than ever to start a national conversation to elevate Sickle Cell Disease and find workable solutions among all stakeholders.

Congresswoman Stacey Plaskett and Congresswoman Barbara Lee, along with 40 members of the Congressional Black Caucus, recently contacted you and shared that “…our healthcare system is poorly equipped to ensure that patients will have meaningful access to these therapies upon their approval…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.”

We know that the Biden Administration shares our commitment to putting the health of this nation and patients first. We thank you for giving serious consideration to elevating the voices of the Sickle Cell Disease community and improving the lives of patients. We look forward to seeing a national conversation led by the White House, HHS and members of Congress around this critical issue.

Sincerely,