Tag Archives: Sickle Cell News

SCDAA Urges Renewal of Critical Sickle Cell Program

The Sickle Cell Disease Association of America Inc. urges the U.S. Department of Health and Human Services (HHS) and its Health Resources and Services Administration (HRSA) to issue the funding opportunity for the Sickle Cell Disease Newborn Screening Follow-Up Program to ensure the next five-year grant cycle, which is set to start Sept. 1, proceeds without delay. 

The Follow-Up Program, which has been funded by Congress since 2002, is the only federal grant program that provides funding to sickle cell disease community-based organizations (member organizations). The House of Representatives fiscal year 2027 appropriations language, just released on June 8, includes $7 million again for this program, but HHS has yet to issue a new notice of funding opportunity, causing concern in the sickle cell disease community that this grant may no longer continue. 

The funding allows the Follow-Up Program to provide grants to 25 sickle cell disease member organizations across 22 states, including states that have the highest prevalence of sickle cell disease, such as Florida, Texas, Georgia and New York. member organizations use the grant dollars to provide critical support services that directly impact sickle cell disease warriors. 

On May 28, Reps. Troy Carter (D-LA) and Alma Adams (D-NC) were joined by 25 other members of Congress in sending a letter to Robert F. Kennedy Jr., secretary of HHS, and Thomas Engels, administrator of HRSA, asking that they quickly issue the next funding opportunity for the Follow-Up Program. The Sickle Cell Disease Association of America Inc. worked closely with Carter and Adams on this letter. Advocates asked members of Congress to join the letter during the Sickle Cell Disease Association of America’s May Hill Day. 

Dr. Crawford Strunk, vice chief medical officer of the Sickle Cell Disease Association of America Inc.:
“Without this program, many sickle cell disease member organizations would be unable to support their mission of providing counseling, education and support services that are essential to a population with limited resources and suboptimal access to care. Through this program, sickle cell disease member organizations connect families affected by sickle cell disease with appropriate services as well as timely interventions such as penicillin prophylaxis, vaccinations and other vital treatments. We strongly urge HHS to release the funding notice for the HRSA Sickle Cell Disease Newborn Screening Follow-up Program.” 

Tabatha McGee, CEO of the Sickle Cell Foundation of George Inc., which has received funding from the Follow-up Program since 2015:
“The funding has allowed us to establish and build a robust community health worker (CHW) program. CHWs provide care and resource coordination services in over 91 counties across the state of Georgia, providing 3,011 units of service between 2018 and 2023. In 2025, CHWs provided care and resource coordination services to 684 individuals with sickle cell disease. Three hundred and thirty were either placed or maintained in routine medical care. This translates to an approximate cost savings of $526,680 in reducing the unnecessary use of emergency departments for care by increasing the use of routine care.” 

Dr. Carolyn Rowley, executive director of Cayenne Wellness Center, which has received funding from the Follow-up Program since 2015:
“This grant funding allows us to provide critical, wraparound support services for individuals and families affected by sickle cell disease, including transportation assistance, childcare and respite care, and the support of six community health workers who play a vital role in care coordination, education and patient advocacy. Over 1,200 sickle cell warriors are directly impacted by this grant funding each year. In 2024 alone, we provided more than 2,400 care-coordinated services through our programs. These supports have made a profound difference in health outcomes and quality of life for individuals living with sickle cell disease. Losing this funding would risk reversing that progress and creating barriers to life-sustaining care.” 

Dr. Wanda Whitten-Shurney, CEO and medical director of the Sickle Cell Disease Association of America Michigan Chapter Inc., which has received funding from the Follow-up Program since 2015: 
“This grant has allowed us to provide essential care coordination to help to ensure that our warriors and caregivers can navigate the healthcare system which includes education referrals to hematologists, primary care providers and subspecialists. The grant pays 20% of the salaries of our CHWs who have been able to support over 800 patients.” 

The Sickle Cell Disease Association of America Inc. recognizes that the grant opportunity for HRSA’s Sickle Cell Disease Treatment Demonstration Program was released on Friday, June 5. This program funds sickle cell disease treatment centers and works in tandem with the Follow-Up Program. The published funding opportunity, however, does not mention the Follow-Up Program.

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 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

Click here to download and print this flyer.

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.

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.

CMMI Announces the Cell and Gene Therapy Access Model

Today, the Centers for Medicare and Medicaid Innovation (CMMI) announced the launch of their new Cell and Gene Therapy Access Model, a demonstration aimed at improving access to cell and gene therapy products in the Medicaid program. CMMI chose sickle cell disease (SCD) as the first indication for the model. The intent of the model is to provide access to the two recently approved gene therapy products for SCD for individuals insured by Medicaid. Participation by state Medicaid programs will be optional.

SCDAA is excited about the model and appreciated that CMMI engaged with our organization and the broader SCD community while developing the demonstration. SCDAA will be reviewing the information released today in detail, but we are hopeful that this effort will help ensure that individuals living with SCD on Medicaid who are interested in pursuing gene therapy are able to do so.

To read the full statement from the Centers for Medicare & Medicaid Services, click here.

Sickle Cell Disease is Not a Joke

This weekend’s Saturday Night Live skit about the recent historic approvals of potentially curative gene therapies for sickle cell disease is distasteful at best and harmful at worst. Earlier this month, the Food and Drug Administration approved groundbreaking new treatments that could change the lives of thousands. SNL chose to cast a spotlight on this news with a tone-deaf skit depicting a workplace Yankee Swap event in which one of the gifts is the “cure” for sickle cell disease. It is given to an African American character, who quickly trades it for a “Boogie Woogie Santa Claus” toy. The rest of the skit consists of the white characters trying to convince their two Black co-workers to choose the cure over the other Yankee Swap gifts. Their attempts are unsuccessful.

We are disappointed that Saturday Night Live chose to trivialize this landmark moment in history during their program. More than 100,000 people in the United States and millions globally are impacted by this devastating disease, and yet it is one of the few debilitating conditions that you will find people joking about on television. Earlier this year, sickle cell disease was the subject of a lame and insensitive attempt at humor on the HBO Max show Velma and, shortly thereafter, as a quasi-joke-insult by comedian D.L. Hughley on The Daily Show. Some may argue that these references are “just jokes,” but for those impacted by this disease, it is no laughing matter.

Jokes like these undermine the seriousness of this condition. Sickle cell disease (SCD) is an inherited blood disorder and rare disease that affects red blood cells. When these red blood cells become sickle-shaped, or crescent-shaped, they block blood flow to the affected part of the body, causing irreversible organ and tissue damage. When this happens, individuals with sickle cell can suffer from intractable, crippling acute pain called a “crisis” and are at elevated risk for strokes, damage to affected tissue, and all too often, an early death. In fact, a recent study showed the median age of death of those suffering from chronic sickle disease complications was only 43 years.

SNL’s treatment of race in the Yankee Swap skit also misses the mark. Part of the “humor” revolves around the common myth that only Black people can have sickle cell disease. While it does disproportionately impact the Black community, sickle cell does not discriminate. People of all ethnic backgrounds can inherit the disease. In the United States, Hispanic and Latino populations have the second highest incidence, but Asian, Indian, Native American and – yes – White people, can all be born with the disease. On a global scale, sickle cell disease affects people from countries around the world, including Italy, India, the United Kingdom and Jamaica. One doesn’t develop sickle cell disease, nor can one “catch it.” Individuals are born with it, and there is no universal cure.

Why are we joking about a disease as serious as this one? Many people don’t understand the devastating reality of the condition. The onset of sickle cell pain is sudden and debilitating. A pain crisis is relentless and can last for hours or for days. It has been described as feeling like you are walking on hot coals or like shards of glass are traveling through your veins. Far too often, when individuals living with sickle cell disease, or “warriors” as they call themselves, are in crisis and seek medical care in some emergency departments, they face long waiting periods, are accused of exaggerating symptoms for attention, and far, far too often are characterized and treated as if they are drug seekers.

For physicians who are knowledgeable about sickle cell disease and experienced in caring for those living with it, their ability to prescribe the very drugs that will help their patients is hampered by current federal regulations put in place to address the opioid crisis thus limiting how these drugs can be used in cases such as sickle cell. Layer on issues of health care inequity, discrimination and limited access to consistent, comprehensive quality care and the word “crisis” takes on new meaning.

Community-based organizations, such as the 50-plus members of the Sickle Cell Disease Association of America, Inc., spanning 29 states, are on the ground and focused on providing support, resources, and services to serve more than 500,000 children and adults living with or impacted by sickle cell disease.

Sickle cell disease also puts a strain on caregivers and family members, who must fit trips to the emergency room, doctors’ appointments and sick days into the rigors of daily life. Parents of children with sickle cell may lose wages, promotion opportunities or jobs as they try to support their family while attending to pain crises and their child’s care. This pressure can cause personal and professional instability, compromise mental health and wellness, and, in too many cases we have seen, lead to homelessness.

It is for all of the above, and more, that the Sickle Cell Disease Association of America, Inc., condemns the use of sickle cell disease as a punchline. It demeans and ridicules a condition that people are born with and from which they will face devastating health challenges throughout their lifetimes.

Stereotypes and misinformation reinforced by thoughtless comedy have real-life consequences. Sickle cell patients struggle daily to be taken seriously—in school, at work and even playing sports. As we work to change the perception of sickle cell and increase education surrounding this condition, insensitive and inappropriate jokes like these demean, marginalize and disrespect those living with the disease. They work against progress and contribute to the spread of misinformation. As a society, we must do better and treat rare diseases and the people who live with them with the respect they deserve.

Sickle cell is not a joke.

SCDAA and MedicAlert Foundation Launch Pilot Program

Leading Sickle Cell Organization and MedicAlert Foundation Launch Pilot Program to Improve Emergency Care During Sickle Cell Pain Crises

Non-profits partner to help people with sickle cell disease get faster, better emergency care.

HANOVER, MD – Sickle Cell Disease Association of America (SCDAA), the leading national organization and voice for people with sickle cell disease (SCD), today launched a pilot program with MedicAlert Foundation to enhance the safety and well-being of people living with sickle cell disease (SCD).

Acute pain episodes known as sickle cell crises are one of the most common and debilitating symptoms of SCD. These crises can be unpredictable and extremely painful, lasting from a few hours to a few weeks. They’re the number one reason people with SCD seek emergency treatment.

However, SCD patients seeking treatment for a sickle cell crisis face hurdles to getting the care they need in the Emergency Department (ED). The goal of the pilot program is to improve access to timely, effective emergency care for people experiencing a sickle cell crisis.

The program provides participants with a MedicAlert digital health profile to store their physician-approved pain plan, physician contact information, and other vital health data. Each participant also receives a customized Smart Medical ID Card, which provides easy access to their health information and pain plan via a QR code.

The goal is to shortcut time to diagnosis and treatment. When seeking emergency treatment, participants will present their Smart ID Card to share their health history with ED personnel – confirming their SCD status, and providing the critical details needed for ED personnel to provide care.

“With more than 100,000 people in the U.S. living with SCD, finding an intervention to help improve the speed and quality of ED care would be hugely impactful,” said Regina Hartfield, President and CEO of SCDAA. “For this program, we’re leveraging Medicalert’s decades of experience providing medical information in emergencies – as well as MedicAlert’s visibility in the medical community – to help people living with sickle cell.”

MedicAlert Foundation is a leading nonprofit providing lifesaving medical ID and emergency response services for millions of people living with chronic health conditions.

“Since 1956, MedicAlert has been globally trusted by both emergency medical personnel and people living with serious health conditions,” stated Karen Cassel, MedicAlert Foundation’s President and CEO. “We’re pleased to launch this pilot during Sickle Cell Awareness Month. Our hope is to equip and empower SCD patients with tools to help them quickly get the care they need during a pain crisis.”

The pilot will run for one year. Two-hundred fifty adults in states with significant sickle cell populations are being recruited to participate in the first round.

“We believe this program has the potential to significantly improve outcomes for people experiencing sickle cell crises,” Hartfield said. “With positive results, we’ll seek additional funding to expand the program nationally.”

More details about the program, including full eligibility guidelines and how to apply, are available at medicalert.org/sicklecellpilot. Anyone living with SCD who has additional questions about the pilot should contact either their local SCDAA chapter, or email MedicAlert at sicklecellpilot@medicalert.org.