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. 7432), which expands the existing Medicaid Health Home program, first authorized as part of the Affordable Care Act, to allow states to submit a state plan amendment (SPA) to establish a Health Home with SCD as the single qualifying condition for eligibility.
Read ASH's Fact Sheet on the Sickle Cell Disease Comprehensive Care Act.
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
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 May 2024, ASH and 85 organizations sent a letter to the House of Representatives Committee on Energy and Commerce, urging the committee to markup the legislation soon as possible.
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.
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 has urged Congress to provide at least $10 million in dedicated funding for the Sickle Cell Disease Data Collection program at the CDC in fiscal year 2025.
Read ASH's Fact Sheet on the CDC Sickle Cell Data Collection program.
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.
September 2023
ASH, the Sickle Cell Disease Association of America, and Sick Cells co-hosted a congressional briefing which included presentations by ASH President Dr. Robert Brodsky and ASH Committee on Practice Chair Dr. Chancellor Donald and which highlighted the current state of health care for individuals with SCD and the critical need for comprehensive care and access to cures. Golda Houndoh, an SCD advocate, joined the panel to share her story as an SCD warrior, including the challenges she has faced throughout her life while attempting to receive care. Proposed policy strategies to improve the health outcomes of individuals with SCD were also discussed, including urging congressional offices to support passage of the Sickle Cell Disease Comprehensive Care Act.
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.
rECENT efforts ON Capitol Hill
See what ASH did in 2023, 2022, and 2021 to raise awareness of SCD and Sickle Cell Trait.
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