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Sickle Cell Disease Advocacy

Since 2015 the Society has been committed to improving the outcomes for individuals living with sickle cell disease (SCD). By working in collaboration with federal agencies, the U.S. Congress, and the U.S. Department of Health and Human Services, ASH continues to support a variety of SCD initiatives, including:

Sickle Cell Disease Comprehensive Care Act

ASH supports the Sickle Cell Disease Comprehensive Care Act (H.R. 6216/S. 3389), which authorizes the Centers for Medicare and Medicaid Services to conduct a 5-year demonstration project in no less than 5 and in up to 10 states to improve access to high-quality outpatient care for individuals with sickle cell disease enrolled in Medicaid.

The legislation:

  • Establishes planning grants and implementation grants to improve access to comprehensive, outpatient care for individuals living with sickle cell disease
  • Ensures coordination of and access to clinical, mental health, and ancillary and support services to address the physical, mental, and social needs of individuals with sickle cell disease
  • Provides participating states with the federal medical assistance percentage (FMAP) equal to 100% with respect to amounts expended for medical assistance for medically necessary services to treat individuals with sickle cell disease, cared for under this program

To read the full legislative text, find out who cosponsors the legislation, and more, click here for the House of Representatives (H.R. 6216) and here for the Senate (S. 3389).

Check out ASH’s fact sheet on the bill.

Act Now! We need your help in getting your elected officials to cosponsor this legislation. Contact your members of Congress to ask them to cosponsor this legislation.

Supporting Organizations
The legislation is supported by a diverse group of organizations, representing providers, patients, and industry. In September 2021, ASH and 40 other groups wrote to the current sponsors of the legislation – Senators Booker and Scott and Representatives Davis and Burgess – calling on them to introduce bill.

HRSA Sickle Cell Disease Treatment Demonstration Program

ASH urges Congress to support and maintain funding for the Health Resources and Services Administration/Maternal and Child Health Bureau’s Sickle Cell Disease (SCD) programs - the SCD Treatment Demonstration Program and SCD Newborn Screening Program.

The grantees funded by these programs work to improve access to quality care for patients living with SCD and sickle cell trait. Download the ASH fact sheet to learn more about the impact that this program will have on patients.

The SCD Treatment Demonstration Program was authorized by the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 (P.L. 108-357). The program funds five geographically distributed regional SCD grants that support SCD providers to increase access to high quality, coordinated, comprehensive care for people with SCD. Program goals include:

  • Improving the quality of care for people living with SCD
  • Increasing health professionals’ knowledge of state-of-the-art SCD care and treatments, and
  • Improving coordination of care with other providers and SCD programs.

The SCD Newborn Screening Program provides grants to support a National Coordinating and Evaluation Center and community-based demonstration sites across the country that support comprehensive care for newborns diagnosed with SCD. The purpose of the program is to facilitate access to quality SCD care by:

  • Conducting outreach and working with individuals and families with SCD from the time a newborn screen identifies a child with possible SCD, through diagnosis, treatment and follow-up;
  • Providing education to families and providers;
  • Disseminating resources;
  • Collaborating with state newborn screening programs; and
  • Linking individuals and families to community resources, evidence-based SCD care, and care coordination within the communities where they reside to the fullest extent possible.

CDC Sickle Cell Disease Data Collection Program

The Centers for Disease Control and Prevention (CDC) has established a population-based surveillance system to collect and analyze longitudinal data about people in the U.S. living with SCD. ASH supports at least $10 million in dedicated funding for the Sickle Cell Disease Data Collection program at the CDC in fiscal year 2023.

Congressional Briefings

ASH educates members of Congress and their staff about SCD in numerous ways, including advocacy meetings with ASH members and hosting Congressional briefings.

October 2021
ASH, along with the American College of Obstetricians and Gynecologists, the Association of Maternal & Child Health Programs, the Sickle Cell Disease Association of America, the Foundation for Women and Girls with Bleeding Disorders, and the Sickle Cell Reproductive Education Directive cosponsored a virtual congressional briefing: Their Lives Depend on Us: Rising to the Challenge of Providing High Quality, Evidence-Based Reproductive Health Care for Women with Sickle Cell Disease.

October 2020
ASH and the Sickle Cell Disease Association of America (SCDAA), in conjunction with Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives Danny K. Davis (D-IL) and Michael C. Burgess, M.D., (R-TX), hosted a virtual congressional briefing on sickle cell disease (SCD). The briefing presented an overview of the current state of SCD during the pandemic and highlighted the recent report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, released by the National Academies of Sciences, Engineering, and Medicine (NASEM), along with policy strategies as recommended by the report.

Latest efforts in Capitol Hill

See what ASH did in 2021 to raise awareness of SCD and Sickle Cell Trait.