Today, U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra Assistant Secretary for Health Admiral Rachel Levine, MD, released the following statements to celebrate September as National Sickle Cell Awareness Month:

Xavier Becerra – HHS Secretary

“More than 100,000 Americans have Sickle Cell Disease (SCD). In addition to debilitating pain crises, many of those suffering from SCD – they are often called warriors - face serious health complications, including infections, strokes, vision problems, and organ damage. Unplanned hospital stays are common, causing untold disruptions to daily life. The estimated life expectancy of those with SCD in the United States is more than 20 years shorter than the average life expectancy. African Americans and Latinos are disproportionately affected and all individuals living with SCD experience challenges with access, quality, and affordability of care. 

As we celebrate National Sickle Cell Awareness Month, we acknowledge the perseverance, strength, and resiliency of all those living with this disease. While medical advancements bring us closer to cures, too many individuals with Sickle Cell Disease and their loved ones still face challenges obtaining the care they need. The Biden-Harris Administration has worked tirelessly to provide care and support for those living with SCD, and to advance research into new treatment modalities. We will continue with this work as long as there is need.

This month, we renew our commitment to close gaps in care, prevent stigma, and accelerate the identification and implementation of innovative solutions to improve the quality of life for patients living with SCD. We continue to work on improving the quality of life for people affected by this disease and find new, potentially transformative treatments.” 

Admiral Rachel Levine, M.D. – Assistant Secretary for Health

“At the Department of Health and Human Services, we are committed to enhancing the quality of life for individuals with sickle cell disease through innovative research, comprehensive care programs, and robust public education. By partnering with researchers, healthcare providers, and community organizations, we strive to address disparities in treatment and access, ensuring that every individual with sickle cell disease receives the care and support they deserve. Let us use this month to spread awareness, foster understanding, and drive meaningful change. Together, we can make significant strides toward improved treatment and, ultimately, a cure."  

The Biden-Harris Administration at HHS is leading efforts to close gaps in care and advance treatments and cures for SCD:

• The Centers for Medicare & Medicaid Services is developing a Cell and Gene Therapy Access Model, which will help Medicaid beneficiaries gain access to potentially life-changing, high-cost specialty drugs for illnesses like sickle cell disease.  
• The Health Resources and Services Administration is assisting with early identification and treatment of SCD and helping community-based organizations and clinics conduct testing, counseling, and education.  
• In December 2023, the FDA approved two gene therapies that have shown promise in preventing organ damage, improving overall health, and boosting quality of life for people living with sickle cell disease. These one-time gene therapies can dramatically increase a person’s lifespan and can also be cost-effective compared to the traditional lifelong treatments for sickle cell disease.
• The HHS Office for Civil Rights promulgated a new rule for Section 504 of the Rehabilitation Act, ensuring non-discrimination in healthcare services for people living with Sickle Cell Disease.
• The Centers for Disease Control and Prevention expanded their Sickle Cell Data Collection program to 16 states, covering approximately 50% of the SCD population in the U.S.
• NIH continues to conduct groundbreaking research into SCD. This week they released results of a three-year study that found so-called low-intensity blood stem cell transplants, which use milder conditioning agents than standard stem cell transplants, do not appear to damage the lungs and may help improve lung function in some patients with SCD.
• The Office of the Secretary launched a new virtual series (i.e., SCD SOAR) designed to improve quality of life for SCD warriors and families by sharing curated resources on priority topics (e.g., mental health, housing) from different federal agencies.