SCDAA’s Current Legislative Priorities

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For the most up to date information, check out our latest Advocacy Update.

Legislation passed in 2025 made sweeping changes to the Medicaid program. The changes with direct impact on sickle cell warriors go into effect in 2027; for certain Medicaid beneficiaries, this includes more frequent eligibility redeterminations and work reporting requirements. SCDAA’s main priority is to protect access to Medicaid coverage for sickle cell warriors. We are closely tracking implementation of these changes and will continue to provide information to the community as it becomes available. In the meantime, please check out this statement with tips on what sickle cell warriors can do now to protect their Medicaid coverage.

SCDAA’S ADVOCACY PRIORITIES

In 2024, SCDAA conducted a strategic planning process and worked with SCDAA member organizations to identify the greatest needs of the community. The following priority principles were identified and help guide SCDAA’s advocacy efforts:

Improving Access to Health Care in Appropriate Settings
Improve access to and the affordability of needed healthcare services for individuals living with sickle cell disease in the most appropriate settings. 

Meeting Basic Needs
Assist SCD Warriors in meeting basic financial, housing and transportation needs and finding sustainable solutions. 

Furthering Education & Outreach
Provide critical educational and outreach programing for SCD Warriors throughout the life cycle.  

Advancing Research and Development
Advancing research and the development of new treatments for sickle cell disease and improve and streamline collection of data to inform the research agenda and better serve the SCD community. 

ADVOCACY UPDATE: Congress Passes Government Funding Bill with Big Wins for the SCD Community

In February 2026, the president signed a package of bills providing funding for government programs for fiscal year (FY) 2026 into law. All three federal sickle cell disease programs were maintained with the same funding levels as years prior. Read more.

Priorities and Activities

SCDAA-supported Legislation in the 119th Congress

The Sickle Cell Disease Comprehensive Care Act (H.R.5178/S. 721) 

  • The legislation would allow state Medicaid programs to provide comprehensive and coordinated care to sickle cell warriors through a health home model.
  • Bipartisan legislation was introduced in the House and Senate by Reps. Neal Dunn (R-FL-2) and Danny Davis (D-IL-7) and Senators Tim Scott (R-SC) and Cory Booker (D-NJ).

Sickle Cell Disease Federal Programs

SCDAA continues to advocate for the three sickle cell disease federal programs both through legislative efforts, such as the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act, and through the Congressional appropriations process.  

The Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection (SCDC) Program collects data on individuals living with SCD in 16 states (AL, AZ, CA, CO, FL, GA, IN, MI, MN, NC, NJ, RI, TN, TX, WI), which represents about half of the U.S. sickle cell population. The Program collects data to better understand where individuals with SCD are living, how they access health care, or what might be preventing them from accessing care. Ultimately, this information is used to help improve access to care, thereby decreasing costs for the healthcare system as a whole. The CDC’s SCDC Program is currently funded at $6 million annually.  

The Health Resources and Services Administration’s (HRSA)/Maternal and Child Health (MCH) Sickle Cell Disease Newborn Screening Follow Up Program funds 25 SCD community-based organizations (member organizations). Through the program, SCD member organizations provide services, such as educational and social support services, to individuals living with SCD. The Newborn Screening Follow Up Program is currently funded at $7 million annually.  

The HRSA/MCH Sickle Cell Disease Treatment Demonstration Program (SCD TDP), originally created by Congress in 2004 and reauthorized as recently as 2018, funds five comprehensive SCD centers that provide care directly to people in their region and award subgrants to additional SCD centers using a hub-and-spoke model. The SCD TDP aims to increase the number of clinicians and other health professionals specializing in SCD care, improve the quality of care provided to individuals living with SCD, and improve care coordination with other providers. SCD TDP is currently funded at $8.205 million annually.  

Centers for Medicare and Medicaid Innovation (CMMI) Cell and Gene Therapy Access Model

The Cell and Gene Therapy (CGT) Access Model officially launch in January 2025. The intent of the model is to improve access to the two sickle cell disease gene therapy products for eligible individuals insured by Medicaid.  

The following states are participating in the demonstration: Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Florida, Illinois, Kansas, Kentucky, Louisiana, Maryland, Michigan, Mississippi, Missouri, New Jersey, New York, North Carolina, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode Island, South Carolina, Tennessee, Texas, Utah, Vermont, Virginia, Washington, West Virginia, and Wisconsin, as well as the District of Columbia and Puerto Rico. 

Of these participating Medicaid programs, the following have applied for and been awarded Cooperative Agreement funding, which provides additional funding to states to help provide supportive services to the sickle cell warriors who choose to pursue gene therapy under the Model: Connecticut, District of Columbia, Illinois, Mississippi, North Carolina, Pennsylvania, Rhode Island, and Vermont. 

You can learn more on the Model’s webpage.

National Academies Report on Sickle Cell Disease and Social Security Disability

Over the past couple of years, SCDAA has joined partner sickle cell disease organizations to advocate for much needed updates to the Social Security Administration’s eligibility criteria for applying for SSA disability benefits. Sickle cell warriors are often denied disability payments as a result of the overly restrictive criteria.  

After outreach to SSA, the agency tasked the National Academies of Sciences, Engineering, and Medicine (NASEM), an independent organization that is often called upon by the government for policy analysis, with reviewing the latest published research and science and to produce a report on best practices and community experiences in the management and treatment of sickle cell disease. The final report was released in December 2025.  

SCDAA strongly supports the reports’ conclusions and is eager to work with the Social Security Administration to implement appropriate and needed changes to the current Social Security disability criteria for sickle cell disease. 

This final report recognizes the broad variation in sickle cell disease and its complications as well as approaches to both acute and chronic pain management, highlighting that for a number of reasons, pain is often managed at home or in a variety of outpatient care settings. 

You can read more in SCDAA’s statement on the final report.