Author Archives: Emma Day

MARAC Statement on Pociredir

June 2026 – The Sickle Cell Disease Association of America, Inc. (SCDAA) Medical and Research Advisory Committee (MARAC) is saddened to hear the news that Fulcrum Therapeutics is discontinuing development of its pociredir program for the treatment of sickle cell disease.

Pociredir is an investigational oral therapy that was hoped would increase fetal hemoglobin. The U.S. Food and Drug Administration (FDA) expressed safety concerns linked to drugs targeting the protein complex which pociredir targeted.

Though progress has been made in the treatment of sickle cell disease, there is still a limited number of therapies available for individuals suffering from sickle cell disease. MARAC encourages the pharmaceutical industry and the FDA to work with the sickle cell community to continue to look for therapies that not only address the clinical outcomes that are often evaluated in sickle cell studies, but also explore outcome measures and endpoints that address patient-reported outcomes that impact quality of life. MARAC looks forward to continuing to partner with the pharmaceutical industry, government and the sickle cell community to find treatments for the sickle cell population.

Download this statement.

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.

SCDAA and NHLBI To Host Event

The National Heart, Lung, and Blood Institute (NHLBI), part of the National Institutes of Health (NIH), in partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA), will host Research That Heals: Partnering to Transform SCD Care on June 25-26, 2026. This 1.5-day hybrid (in-person and virtual) community forum will be a crucial platform for engaging directly with the sickle cell disease (SCD) community, including individuals with SCD and their caregivers, healthcare providers and community-based organizations. During the forum, participants will discuss and develop solutions to enhance care and improve the quality of life for children and adults living with sickle cell disease.

Click here to register.

2026 National Abstract Competition

SUBMIT YOUR WORK

If you are a researcher, community-based member organization, physician, nurse, social worker or someone working on behalf of people living with sickle cell disease and their families, the Sickle Cell Disease Association of America, Inc. would like to highlight your work at the 54th Annual National Convention, October 15-17, 2026, in-person.

To be eligible, abstracts must meet guidelines and be submitted by June 22, 2026. Late submissions will not be accepted. Abstracts will be reviewed and ranked by the national abstract review committee. We hope to notify you of acceptance beginning July 24, 2026. Abstract finalists will be judged during oral presentations and presented at the SCDAA Gala (Friday evening, October 16th)

“Best Abstract” in each category will be announced at the SCDAA 54th Annual National Convention. Special awards for the best student and trainee abstracts will also be given.

Submission Instructions and Guidelines

Abstract text must be written in English and contain the following:

  • TITLE: Use a concise title typed in CAPITAL LETTERS.
  • AUTHORS: List authors’ names (First name, middle initial, last name) and institutional affiliations as briefly as possible. Indicate authors who are trainees (such as student, grad student, post-doctoral fellow, intern, resident, apprentice, etc.) and list them first if the work is their project.
  • ABSTRACT TEXT:
  • Structure text utilizing the following subheadings: Objective, Methods, *Results, and Conclusions.
  • Submit abstracts in written form for scoring.
  • Authors can be modified to have less duplication of contact information for co-authors.
  • Abstracts without results will not be accepted.
  • Please do not submit tables or charts with your abstract.
  • ABSTRACT CATEGORY: If your abstract seems to fit more than one category, please select a first choice and a second choice – the abstract judges will decide.
  • CHARACTER COUNT:  5000 characters maximum (no exceptions).

2026 Presentations, Topic Categories, and Examples

Categories for abstract judging are listed here. Trainee presentations are a subcategory of each topic. If your abstract seems to fit more than one topic category, please select a first choice and a second choice – the abstract judges will decide which category fits best.

  • Public Health Policy
  • Community-Based Research
  • Basic and Translational Research
  • Clinical Research
  • Psychosocial Research
  • Gene Therapy Hematopoietic Stem Cell Transplant
  • SCD Global Health
  • Sickle Cell Trait

Abstract FAQs.

Novo Nordisk Announces Promising Topline HIBISCUS Study Results

In an announcement, Novo Nordisk shared that Etavopivat is the first in a new class of drugs to meet both co-primary endpoints in the phase 3 HIBISCUS trial, substantially reducing vaso-occlusive crisis events and improving hemoglobin response in sickle cell disease. SCDAA is pleased to hear this news. We will continue to monitor these developments and look forward to learning more about the results of this study.

Read the statement.

SCDAA Masterclass (Hosted by Agios Cheat Codes) Now Available

Our final 2025 SCDAA Masterclass – Sickle Cell in the Media: Scene & Heard (Hosted by Agios Cheat Codes) – is now available! Recorded live at the 2025 SCDAA Convention in Chicago, this special Masterclass dives into how sickle cell disease is portrayed in film, TV and beyond.

From blockbuster films to powerful documentaries, our panelists (patients, advocates and filmmakers) unpack how storytelling can change minds, challenge stigma and build connection. Featuring voices from the sickle cell community, this is one conversation you don’t want to miss.

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.

In Remembrance of KiKi Shepard

The Sickle Cell Disease Association of America, Inc. (SCDAA) mourns the loss of KiKi Shepard, an actress and dedicated sickle cell advocate, who passed away recently at the age of 74. Many knew KiKi as a longtime co-host of the “Showtime at the Apollo” variety show, but she was also the founder of sickle cell nonprofit The KIS Foundation and worked closely with many individuals and organizations in the SCD community, including SCDAA.

In a letter on her website, KiKi says that her advocacy journey began “when I saw the effect on the family of a personal friend whose brother suffered and died as a result of this terrible disease. The strong desire to combat my shared grief and sense of helplessness led me to offer my services to the Sickle Cell Disease Association of America, Inc. Through this national organization, I was introduced to SCD families across America and was able to interact with many patients whose bodies and minds are ravaged by this disease.”

KiKi worked closely with SCDAA until she founded her own organization in the mid-2000s. She served as the moderator of the Lonzie Lee Jones Symposium at the 38th Annual National Convention in 2010 and remained active in the SCD advocacy space throughout her life.

According to a statement released by her family, “KiKi believed that compassion, community and education could change lives. Her voice uplifted countless individuals who often felt unseen, and her work created lasting pathways for hope, resources and understanding for those living with this disease.”

Thank you, KiKi, for your commitment to our cause. We send our sincere condolences to her friends and family for their loss.

Fulcrum Therapeutics to Host Congressional Briefing

Understanding the Need for Improved Patient Access to Sickle Cell Disease Treatment Options
Hosted by Fulcrum Therapeutics

Thursday, March 19, 2026
10:00 to 11:00 AM ET
Rayburn House Office Building, Room 2043

This briefing will bring together clinicians, patient advocates, researchers, and policy leaders for a moderated panel discussion on the current treatment landscape for sickle cell disease and what Congress can do to improve access and outcomes for the 100,000 Americans living with this condition. SCDAA President and CEO Regina Hartfield is one of four featured panelists.

Sickle cell disease disproportionately impacts Black and Latino communities and remains one of the most underfunded and under-resourced conditions in federal health policy. This is a conversation worth being in the room for.

RSVP Here