Category Archives: Advocacy

DECEMBER 2025 LEGISLATIVE BRIEFING

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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.

SCDAA Response to National Academies Release of Final Report on Sickle Cell Disease and Social Security Disability Evaluations

On December 9, 2025, the National Academies of Sciences, Engineering, and Medicine (NASEM), released the second and final Sickle Cell Disease in Social Security Disability Evaluations 2025 Report. This report was completed at the request of the Social Security Administration, which tasked NASEM with reviewing the latest published research and science and producing a report on best practices and community experiences in the management and treatment of sickle cell disease. NASEM also released an interim report in June 2025.  

The Sickle Cell Disease Association of America Inc. (SCDAA), and its Medical and Research Advisory Committee (MARAC) strongly support the report’s conclusions and are 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. The report’s important conclusions include: 

“There is an opportunity to improve the accuracy in the determination of disability by considering the broad variability in sickle cell disease complications and approaches to both acute and chronic pain management in a variety of settings…” 

“The frequency of sickle cell disease treatment encounters for acute complications, such as pain crises, in the emergency department and inpatient settings … is too restrictive a measure of disease severity. Growing use of alternative models of care has enabled similar levels of care in outpatient or home settings.” 

Additionally, the NASEM Report provides “overarching conclusions” related to the: 

  • full spectrum of pain and the variation in how it is experienced individuals living with SCD
  • lack of access to coordinated care
  • significant issues in transitioning from adolescence to adulthood in care, treatment and disability eligibility

The NASEM conclusions provide SCDAA and MARAC with justification to advocate for changes to the current disability criteria for sickle cell disease. 

Individuals with sickle cell disease face barriers when applying for Social Security disability and are often denied because of the overly restrictive criteria. The findings and conclusions made by this important report will enable the sickle cell disease community to initiate much needed changes.   

Sickle cell disease is a rare inherited blood disease causing red blood cells to take a sickle shape, which leads to blockages that prevent blood from reaching parts of the body. As a result, people with sickle cell complications can experience anemia, jaundice, gallstones, stroke, chronic pain, organ damage and premature death. No universal cure exists. 

Sickle Cell Disease Association of America Inc. advocates for people affected by sickle cell conditions and empowers community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure. The association and more than 55 member organizations support sickle cell research, public and professional health education and patient and community services. (www.sicklecelldisease.org) 

Preparing for Medicaid Changes

On July 4, 2025, President Trump signed into law a bill that cuts $1 trillion from the Medicaid program and makes sweeping changes to eligibility, enrollment processes and more. The new requirements don’t go into effect immediately – but we know they are coming. Here are some steps you can take to protect your Medicaid coverage now and, in the future, as the new requirements go into effect.

  • Know the name of your Medicaid program (some go by names like HuskyHealth, BadgerCare, Apple Health; some programs are managed by insurers like Aetna or Centene). Visit Medicaid.gov or your state’s Medicaid agency website.
  • Make sure that your contact information is up to date with your Medicaid program and make a practice of logging into your Medicaid account regularly to check for updates.
  • Sign up for access to your state’s Medicaid portal (if applicable). Check this portal often for messages.
  • Consider having a trusted family member or friend be your “Medicaid Buddy” to help you keep track of due dates, assist with application completion, remind you of enrollment periods or even attend Medicaid appointments.
  • Be sure to open all mail and emails from Medicaid and/or your state’s health department and your insurer. If you receive any communication, respond within the deadline (typically 10-30 days).
  • Begin keeping detailed records of your monthly work or qualifying activities (e.g., caregiving, school, community service). These can include pay stubs, schedules, attendance sheets, etc.
  • SCDAA encourages you to connect with your local sickle cell member organization/SCDAA Member Organization for assistance with completing the above and check the SCDAA website for further information and/or resources.

Click here to download and print this flyer.

Advocacy Alert: Save the Sickle Cell Data Collection Program

Last week, the Trump administration announced drastic changes and reductions to federal health programs that support the sickle cell disease community. Specifically, on April 1, all the staff that oversee the Sickle Cell Data Collection (SCDC) Program at the Centers for Disease Control and Prevention (CDC) were terminated. We are very concerned about the future of this program, and we are asking you to please call or email your Representative and Senators to ask that they reverse the cuts and protect the existence of and funding for the Sickle Cell Data Collection Program.

What is the issue?

The CDC cuts are of particular concern to the sickle cell disease community. The Sickle Cell Data Collection program, which now operates in 16 states, collects data for the sickle cell disease community on things like prevalence, insurance coverage, health outcomes and much more. This data is used to develop interventions and policies that aim to improve care for sickle cell warriors. CDC plans to expand the program across the US.

Collecting data in a centralized place is critical to improving care for any disease. Elimination of the SCDC Program would lead to:

  • Poorer health outcomes for SCD warriors. Data can tell us what treatments work best and for whom, allowing health providers to tailor care.
  • Increased costs to the health care system. The less we know about a disease, the harder it is to provide preventive care to stop complications from arising.
  • Stalled progress on research and innovation. Data guides research which in turn leads to more and better treatment options.

We are calling on everyone (not just member organizations or Warriors in one of the 16 states) to contact their Representative and Senators to ask that they protect the Sickle Cell Data Collection Program!

What can you do?
Step One: Find contact information for your lawmakers’ offices!

Step Two: Say or email (please feel free to personalize)

I am [calling/emailing] as a member of the sickle cell disease community and as a constituent to ask that you protect the Sickle Cell Data Collection Program at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the Sickle Cell Data Collection Program, the only surveillance system dedicated to sickle cell disease, is housed. This program helps collect important data on sickle cell disease which in turn:

  • Helps lead to new and more effective treatments.
  • Guides the development of interventions and policies that aim to improve care for sickle cell Warriors and lower costs for the healthcare system as a whole.
  • Prompts where and when new clinics are built in order to best serve the community.  

I am relying on you, as my [Senator/Representative] in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program. Thank you for your time and attention to this matter.

SCDAA Statement: CMS Cell and Gene Therapy Access Model

Nearly one year ago, the Food and Drug Administration (FDA) approved two new gene therapies for the treatment of sickle cell disease. The Sickle Cell Disease Association of America Inc. (SCDAA) is pleased that the manufacturers of these two FDA-approved gene therapy treatments have entered into agreements with the Centers for Medicare & Medicaid Services (CMS) to participate in the Cell and Gene Therapy (CGT) Access Model. These cutting-edge treatments are poised to make a difference in the lives of many sickle cell warriors, but their high price tags are a barrier to access. The CGT Access Model is a promising effort to reduce cost for these potentially curative therapies for eligible individuals, allowing more patients to benefit from these significant advancements in treating diseases. According to an announcement from the Department of Health and Human Services, the model “will test outcomes-based agreements for cell and gene therapies, with the aim to improve health outcomes, increase access to cell and gene therapies, and lower health care costs.” We are also heartened to see that the model will provide fertility preservation for patients, marking an important acknowledgment of quality-of-life standards for our community.

The Model will launch in January 2025, and all 50 states may choose to begin participation anytime between January 2025 and January 2026. SCDAA looks forward to working with our community-based organizations and other stakeholders to advocate for state enrollment. The CGT Access Model will provide crucial support to patients where available, and we encourage full participation across the country.

Read the full statement from the Centers for Medicare and Medicaid Services.