Tag Archives: SCD Advocacy Update

SCD Advocacy Update June 2026

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SCDAA HOSTS ANOTHER SUCCESSFUL ADVOCACY DAYS

From May 6-7, 24 representatives from 13 SCDAA members organizations across 11 states traveled to Washington, D.C., for SCDAA’s Advocacy Days. Attendees participated in a briefing on May 6, which included information about how to have a successful Congressional meeting, an overview of the issues and asks and a visit from Representative Glenn Ivey (D-MD-04), one of the new co-chairs of the recently relaunched Congressional Sickle Cell Disease Caucus. On May 7, advocates took to Capitol Hill and met with 34 offices to ask Members of Congress to support the sickle cell disease community. This year, attendees requested that Members of Congress:

  • Help protect the federal Sickle Cell Disease Newborn Screening Follow-Up Program by signing a Congressional letter to Secretary Kennedy and HRSA Administrator Engels asking that the grants for the program be extended and that the notice of funding be released quickly to allow grantees to apply for funds for FY 2027. (Read more about the letter
    below.)
  • Show support and interest in furthering issues of importance to the SCD community by joining the bipartisan Sickle Cell Disease Caucus. The Caucus was recently relaunched by Reps. Rich McCormick (R-GA) and Glenn Ivey (D-MD) and will work to advance policies and programs that improve the lives of individuals and families affected by sickle cell disease (SCD).
  • Cosponsor the Sickle Cell Disease Comprehensive Care Act (H.R.5178 or S.721) to help improve clinical and cost-effective care for Medicaid beneficiaries with SCD. The bill would allow states to create a Medicaid Health Home to improve access to comprehensive, high quality, outpatient care for Medicaid beneficiaries with a single qualifying diagnosis of SCD.

SCDAA would like to extend a big thank you to all who took the time to come to Washington, D.C., to advocate on behalf of the sickle cell disease community. Your advocacy made a difference — the sign-on letter closed with 27 total signers — a huge showing of support from members of Congress on this important issue. There are also two new members of the Congressional Sickle Cell Disease Caucus as a result of SCDAA’s Hill Days, Reps. Mfume (D-MD) and Doggett (D-TX).

HRSA’s Sickle Cell Disease Newborn Screening Follow-Up Program provides grant funding to 25 SCD community benefit organizations (member organizations) across the country. The funding is used to support different programs and services offered by member organizations, including training community health workers. The program has been funded by Congress every year since 2002. The current five-year grant cycle ends August 2026 and yet, the Department of Health and Human Services (HHS)/HRSA has yet to issue a new notice of funding opportunity for 2027 and beyond. This is why SCDAA worked with Representatives Troy Carter (D-LA) and Alma Adams (D-NC) to draft a letter to Secretary Kennedy and HRSA Administrator Thomas Engels, asking that they work quickly to issue the new funding notice to ensure there is no gap in funding to SCD member organizations. SCDAA was thrilled to see 27 members of Congress join the letter.

SCDAA will continue to provide updates to members on the status of the HRSA Sickle Cell Disease Newborn Screening Follow-Up Program and the Congressional Sickle Cell Disease Caucus.

HHS OFFICE OF MINORITY HEALTH SICKLE CELL DISEASE WEBINARS

On May 14, the Department of Health and Human Services Office of Minority Health held the first of two webinars focused on advancing comprehensive systems of care for sickle cell disease. Dr. Edward Donnell Ivy, SCDAA’s chief medical officer, presented on the webinar. The second webinar is scheduled for Thursday, June 18 from 2:00 to 3:30 p.m. ET. The objective of this webinar is to provide information about available resources and specific efforts across HHS and address challenges in achieving sickle cell disease comprehensive systems of care. Registration is now open.

CMS ISSUES GUIDANCE ON MEDICAID WORK REPORTING REQUIREMENTS
On June 1, the Centers for Medicare and Medicaid Services (CMS) released long-awaited guidance directing states on how to implement the H.R. 1 Medicaid work reporting requirements (also known as community engagement requirements). It is important to note that we will not fully know how these requirements will be implemented until each state issues its own guidance.

Beginning January 1, 2027, states must require applicable individuals (adults between 19-64 who are not pregnant, entitled to or enrolled in Medicare and are not disabled or receiving SSI) to demonstrate work reporting requirements as a condition of eligibility for Medicaid at application and renewal. To meet these requirements, individuals must complete at least 80 hours of work, community service or participation in a work program each month, be enrolled in an educational program at least half-time or have a monthly income of at least $580 (or any combination of these things).

There are exclusions to the work requirements for individuals who meet certain criteria. Based on this guidance, having sickle cell disease will not automatically exclude someone from the work requirements. Exclusions will be based on the severity of the sickle cell disease and the impact the disease has on one’s ability to work. We anticipate further guidance from states to better understand how this will work.

A full summary of the guidance and an FAQ will be provided soon. Please refer to SCDAA’s Preparing for Medicaid Changes document for what SCD warriors can do now to help protect Medicaid coverage.

SCDAA AWARDS GIVEN TO SENATORS BOOKER (D-NJ) AND SCOTT (R-SC)

As part of SCDAA’s 2025 Annual National Convention, Senators Cory Booker (D-NJ) and Tim Scott (S-SC) were awarded the SCDAA Champion’s Award. This honor is awarded to those who help to advance the understanding, education and awareness of sickle cell disease through
meaningful and important legislation. Senators Booker and Scott have joined together in a bipartisan fashion to lead on a number of different policy initiatives important to the sickle cell disease community, including supporting funding for the federal sickle cell disease programs every year as part of the Congressional appropriations process. Although the Senators were unable to make it in person to the Convention to receive their awards, Regina Hartfield, SCDAA president and CEO, had the opportunity to present the awards in person on Capitol Hill.

SCD Advocacy Update: March 2026

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CONGRESS PASSES FISCAL YEAR 2026 FUNDING PACKAGE WITH BIG WINS FOR THE SICKLE CELL DISEASE COMMUNITY

In early February, Congress finally advanced, and the President signed into law, a funding package for federal programs for fiscal year (FY) 2026, which runs through September 30, 2026. All three federal sickle cell disease programs — Health Resources and Services Administration’s (HRSA’s) Sickle Cell Disease Treatment Demonstration Program, HRSA’s Sickle Cell Disease Newborn Screening Follow Up Program and the Centers for Disease Control and Prevention’s (CDC) Sickle Cell Data Collection Program — were maintained with the same funding levels as FY25.

The funding package also included the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 1796/S. 735) which reauthorizes HRSA’s SCD Treatment Demonstration Program for another five years. SCDAA has been working to advance this legislation since it was introduced in the 118th Congress. Thank you to all who have advocated for this legislation and a special thanks to our Congressional champions Senators Tim Scott (R-SC) and Cory Booker (D-NJ); and Representatives John James (R-MI-10), Danny Davis (D-IL-07), Jen Kiggans (R-VA-2), Troy Carter (D-LA-2) and Marc Veasy (D-TX-33) for helping to get this bill across the finish line.

SCDAA TURNS FOCUS TO FUNDING FOR FY27

Now that funding for FY26 is wrapped up, SCDAA has begun advocating to secure funding for sickle cell disease federal programs for FY27. SCDAA has secured a bipartisan effort in the House of Representatives — Reps. Danny Davis (D-IL) and Jen Kiggans (R-VA) are leading a letter in support of FY27 funding for the federal sickle cell programs. We are also working with staff for Sens. Booker (D-NJ) and Scott (R-SC) and are hopeful that they will send a letter to the Senate Appropriations Committee as they have done in the past. Several Members of Congress have asked SCDAA to complete their Appropriation’s request forms, which shows broader support for the federal SCD programs. These requests and letters of support from Members of Congress to the relevant Appropriations Committees are an important step in securing funding for federal programs.

SCDAA ENGAGES WITH FEDERAL AND STATE MEDICAID PROGRAMS ON WORK REPORTING REQUIREMENTS

SCDAA is closely tracking the coming changes to the Medicaid program. In December, SCDAA met with staff at the Centers for Medicare and Medicaid Services (CMS) to talk about the coming work-reporting requirements and to request that individuals living with sickle cell disease are exempt from these requirements. Since then, SCDAA has sent a follow-up letter to CMS as well as to all state Medicaid directors providing information about sickle cell disease and again, requesting that individuals with sickle cell disease are exempt from these requirements.

States are required to implement work-reporting requirements as a basis of Medicaid eligibility for certain beneficiaries by January 1, 2027, although some states have indicated that they will get started sooner (Nebraska is set to implement as soon as May 1, 2026). Federal guidance is anticipated in June, although implementation details will likely be left up to the states. SCDAA will continue to provide information to members as it becomes available.

SCDAA continues to encourage members to engage with their state Medicaid programs. SCDAA will be sharing information soon about state Medicaid Advisory Committees and Beneficiary Advisory Councils, which are now mandatory in each state, and provide an opportunity for the public to weigh in on Medicaid policy.

OUTREACH TO SOCIAL SECURITY ADMINISTRATION ON DISABILITY EVALUATIONS

In early February, SCDAA joined other sickle cell disease advocacy organizations, including Sick Cells and the American Society of Hematology, in a letter to the Social Security Administration (SSA) requesting again that the agency update the existing criteria used to evaluate sickle cell warriors to determine eligibility for disability benefits. The letter specifically requested that the agency review the report issued by the National Academies in December 2025, which includes strong support for revising the current criteria used by SSA. The agency responded that they are actively reviewing the report. SCDAA will continue to push for these criteria to be updated to better reflect current treatment practices and the reality of living with sickle cell disease.