Category Archives: Advocacy

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 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. 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) 

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.

Midterm Election Outcomes and What they Mean for SCD

An update from John Otsuki, SCDAA government relations manager

As I am sure you’re aware, the United States recently completed a midterm election. All members of the House of Representatives were up for election or re-election, as they are every 2 years, as were 34 Senators (roughly 1/3 of the total).

Before the election, the Democrats controlled both the Senate and the House, both by narrow margins. The 2020-2022 Senate was split 50–50*, with Vice President Kamala Harris breaking tie breakers, effectively giving the Democrats control, while the House was controlled by the Democrats 219 seats to 213 Republican seats.

This November, the Democrats held the Senate, winning 50 seats to the Republicans 49. One race is going to a runoff in mid-December (GA). Regardless of the outcome, the Democrats will retain control, with Senator Chuck Schumer (D-NY) expected to remain as Majority Leader and Senator Mitch McConnell (R-KY) to remain as Minority Leader. In the House, the Republicans the Republicans have won 220 seats, while the Democrats have 213 seats. While two seats are still undecided, control of the House will flip to the Republicans.

Once the results are finalized, the House of Representatives will elect a new Speaker of the House, which will certainly be a Republican. Who that will be remains undecided, with Rep. Kevin McCarthy (R-CA) as the front runner. The current Speaker of the House, Rep. Nancy Pelosi (D-CA), has stepped down from leadership. Representative Hakeem Jeffries (D-NY) has been elected as the new Minority Leader of the House. The new Congress will begin January 3, 2023.

What does this mean for sickle cell disease?

The Republican flip of the House Representatives means that the chair and composition of every committee and subcommittee will change. That means the person deciding which pieces of legislation make it to and through committee and to the floor for a vote will change. Republicans have been open to working on sickle cell disease issues in the past, however, the number of supporters of SCD is drastically lower. Republicans are also less likely to support increased spending for any program. The current pending bills have price tags of $50 million to $535 million annually. Republicans are less likely to support these numbers in their current form.

More importantly, the Senate will still be controlled by the Democrats and the Presidency will still be controlled by the Democrats. This means we will have divided government. As we have seen over the past 20 years, divided governments struggle to pass any meaningful legislation at all. Passing SCD legislation is about to become much more difficult.

I hope this summary was helpful!

-John Otsuki, SCDAA government relations manager

*The Democrats technically have two independents, Senators Angus King and Bernie Sanders, but both caucus and vote with the Democrats.

Texas State Representative Jarvis Johnson Files Four Sickle Cell Disease Related Bills

Sickle Cell Association of Houston has been working on new state legislation in Texas, and on March 6, 2019, State Representative Jarvis Johnson filed four bills that will raise awareness, create a grant program, and improve the lives of those living with sickle cell disease in Texas.
“Sickle Cell is too often a forgotten illness, that predominately affects Black and Hispanic communities. We must work to ensure those living with sickle cell are given the ability to live as pain-free as possible while they are in crisis. Awareness and research is incredibly important to continue to improve the lives of sickle cell patients. I filed these bills today with the intention of not only to bring solutions to Texans living with Sickle Cell Disease, but also to spark a conversation regarding this disease” Representative Johnson stated.
Click here to read the full press release.