Category Archives: SCD Advocacy Update

SCD Advocacy Update June 2026

Download this statement.

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.

DECEMBER 2025 LEGISLATIVE BRIEFING

Download this Briefing

2025 – AN EVENTFUL YEAR IN HEALTH POLICY AND ADVOCACY

2025 brought sweeping changes to the political environment at an intensely quick pace, including many shifts which impact the sickle cell disease community. Along with these challenges, we also saw new opportunities for the sickle cell disease community to stand together.

The year began with President Trump issuing a record number of 142 executive orders in just 100 days and articulating a new approach to federal funding for health care. Initially, we prepared for extensive cuts and a reorganization of the Department of Health and Human Services, including sickle cell disease activities, into the Administration for a Healthy America (AHA). Instead, we survived the longest government shutdown in U.S. history, lasting 43 days.

Ultimately, we did not see the creation of the AHA, and Congress passed a continuing resolution to temporarily fund the federal government at existing funding levels until the end of January 2026. All three federal sickle cell disease programs have been maintained, but advocacy for sustained federal funding will continue.

The summer was dominated by passage of H.R. 1, the “One Big Beautiful Bill Act.” H.R. 1 made the largest cuts to Medicaid in the program’s history, and over time will reduce Medicaid eligibility and enrollment, as well as limit state financing mechanisms. With implementation of H.R. 1 underway and the anticipated expiration of tax credits for Marketplace plans at the end of 2025, SCDAA will continue to prioritize access to insurance for sickle warriors in 2026. SCDAA has created this list of tips of what individuals with sickle cell disease can do now to protect their Medicaid coverage. SCDAA will continue to closely track implementation of the Medicaid changes and provide ongoing information to the community.

Protecting Medicaid and the federal sickle cell programs were the main priorities during SCDAA’s Advocacy Days in May. Thank you to all who participated – your advocacy is meaningful and raises the voice of the sickle cell disease community. These issues will persist in 2026, and SCDAA will continue its advocacy efforts. The good news is that the sickle cell community has strong champions on both sides of the aisle in Washington and a unique story to tell.

We end the year (and this article!) with huge thanks to all of our member organization leaders, individuals with sickle cell and caregivers who advocated this year on behalf of the community. Thank you for reading our many eblasts, emailing and calling your members of Congress, spreading the word to your colleagues and friends and always showing up for sickle cell.

NATIONAL ACADEMIES RELEASES FINAL REPORT ON SICKLE CELL DISEASE AND SOCIAL SECURITY DISABILITY EVALUATIONS

On December 9, the National Academies of Sciences, Engineering, and Medicine (NASEM) released the second and final report related to sickle cell disease and Social Security disability evaluations. As a result of outreach from the sickle cell disease community and members of Congress about the barriers faced by sickle cell warriors when applying for Social Security disability, the Social Security Administration (SSA) tasked NASEM with reviewing the latest published research and science and producing two reports on best practices and community experiences in the management and treatment of sickle cell disease. The interim report was released in June of this year.

SSA was specifically directed not to make recommendations, but to instead provide findings and reach conclusions on SCD. SCDAA is pleased with the conclusions included in the report and issued a statement in support of the NASEM Report and its “overarching conclusions,” which recognize:

  • There is opportunity to improve the accuracy in the determination of disability by considering the broad variation in sickle cell disease 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.
  • Sickle cell disease is stigmatized in ways that may affect an individual’s decision to seek care.
  • The frequency of treatment encounters for acute complications – whether that be the emergency department, inpatient settings or even prescribing of pain medication – is too restrictive a measure of disease severity under the current disability criteria.
  • Access to coordinated comprehensive care across the lifespan will improve outcomes. A lack of access to coordinated care makes it more difficult to obtain an accurate diagnosis and leads to a lack of documentation in medical records. Both can impact access to disability benefits.
  • Transition from adolescence to adulthood is already a challenging time for individuals with sickle cell disease. Children receiving Social Security disability benefits may need to be redetermined using the adult criteria at age 18. Navigating the differences between the child and adult criteria is challenging for individuals with SCD and their providers.

SCDAA believes this report provides additional justification with which to pursue changes to the current disability criteria for sickle cell disease. SCDAA will continue to advocate for the revision of the disability criteria to make it easier for sickle cell warriors to access these benefits.