Author Archives: Emma Day

SCDAA names Folk-Nagua to board

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Krystal Folk-Nagua to the association’s board of directors. Folk-Nagua brings experience as a social work leader, advocate and individual living with sickle cell disease. 

She serves as senior director of programs at Girls for Gender Equity in Brooklyn, New York, where she leads initiatives that merge healing justice, abolitionist social work and youth leadership. In addition, she recruits, trains and supervises youth organizers and social work interns. Previously, she directed social work for charter schools in New York City and served as an adolescent and family therapist. 

Folk-Nagua holds a doctorate in clinical social welfare from New York University’s Silver School of Social Work and a Master of Social Work from Columbia University’s School of Social Work. She has appeared in publications and delivered lectures and trainings. She holds a Bachelor of Social Work from the University of Albany, The State University of New York. 

Thomas L. Johnson continues as the Sickle Cell Disease Association of America Inc. board chair. Adeyinka Ogunlegan was named board vice chair; Ed Flowers was named secretary and Kenneth Thorpe was named treasurer. 

MARAC Statement: Vaccinations

SCDAA’s MARAC Encourages Individuals with Sickle Cell Disease to Speak with Their Health Care Providers About Vaccinations

Jan. 16, 2026 – Recent news and discussion about vaccinations can be confusing to the sickle cell community. SCDAA’s Medical and Research Advisory Committee (MARAC) strongly encourages those living with sickle cell disease to discuss vaccinations with their providers and to keep their vaccinations updated.

Individuals with sickle cell disease (SCD) are at an increased risk of severe infections due to decreased function of the spleen. Functional asplenia, the absence of splenic function without having the spleen removed by surgery, happens in people with sickle cell disease and can make sickle cell warriors much more vulnerable to infection than the general population. Without preventive care, including vaccination and penicillin prophylaxis, many children with sickle cell disease could experience severe infections.Although treatments for sickle cell disease have improved significantly since the 1990s, individuals with SCD can still be harmed by infections. Studies show that vaccines are powerful shields against serious bacterial and viral infections in sickle cell warriors. Even more than the general public, it is important that individuals with sickle cell disease protect themselves from infections through maintaining vaccinations.

The American Academy of Pediatrics (AAP) has provided guidance on the administration of vaccines for the general public, and MARAC endorses these tools in helping communities understand and stay informed about the importance of vaccinations:

We encourage all patients/caregivers to discuss vaccinations with their physician.

Download this statement.

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.

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.

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.

Gene Therapy: What You Need to Know (Warrior FAQs)

Two gene therapies were recently approved by the Food and Drug Administration (FDA) to treat sickle cell disease: Casegevy from CRISPR/Vertex and Lyfgenia from bluebird bio. You probably have questions about these new treatment options. Read more below.

Is gene therapy a cure for sickle cell disease?
Gene therapy is a potentially curative therapy. This means that it could act as a cure, but it is too new to say for sure. It causes a big decline in pain episodes, but we need to learn more about long-term impacts and side effects. It is also not a “one-and-done” treatment. The FDA currently recommends 15 years of patient follow up.

How does gene therapy work?

When will it be available?
Likely in early 2024.

Am I eligible for gene therapy?
Casgevy and Lyfgenia are approved for people ages 12 and up. Sickle cell disease SS and S-beta-zero-thalassemia are eligible. The FDA indicates that sickle cell disease SC is not included. Additionally, you may also not be able to receive gene therapy if you have:

  • A recurring viral infection
  • Significant organ damage

Additionally, if you have a matched sibling, you should go down the path of a matched-sibling-donor bone marrow transplant instead of gene therapy. Talk to your doctor about this option.

What are the side effects?
Gene therapy requires you to have chemotherapy. This means it could result in:

  • Infertility or secondary cancer
  • Temporary weakening of the immune system so that you cannot fight off any infections
  • Temporary hair loss

Where can I receive gene therapy?
Treatment will likely be at an existing bone marrow transplant center that also works with sickle cell disease experts. These may be hard to find. SCDAA will be providing a list of facilities, once identified, on our website: sicklecelldisease.org.

How much will it cost? Will insurance cover it?
Gene therapy is expensive, and FDA-approved high-cost medications can come with barriers. Casgevy is estimated to cost $2.2 million, and Lyfgenia is estimated to cost $3.1 million. We are still waiting to hear how insurance companies will handle gene therapies.

Does gene therapy work for all types of SCD?
As far as we know, yes. It is designed to be able to help raise fetal hemoglobin (HbF), which should work for all different kinds of sickle cell disease. However, the amount of experience with the different kinds has not been nearly the same – we know the most for SS and S Beta zero thalassemia types.

Are we the first community to receive gene therapy?
Casgevy is the first approved use of gene editing. However, gene addition therapy has been used to treat other conditions, including:

  • Retinal degeneration
  • Spinal muscular atrophy
  • Beta-thalassemia
  • X-linked Adrenoleukodystrophy
  • Hemophilia A & B
  • Bladder cancer
  • Acute-lymphoblastic leukemia

To learn more about the gene therapies used to treat these conditions, click here.

For a longer (but not complete) list of conditions that have been treated using gene therapy, click here.

Is it safe? How do I know if this is right for me?
For many people, the benefits of this new treatment outweigh the risks. Your doctors will help you determine whether this is a good option for you.

What questions should I ask my doctor?

  • How long will this take?
  • What is the time commitment?
  • Where is the nearest treatment center?
  • What are my other options?

How do I learn more about gene therapy?
There are several resources available. The below sources are considered trustworthy and non-biased by SCDAA.

To learn more about Vertex’s Casgevy, visit casgevy.com. To learn more about bluebird bio’s Lyfgenia, visit my bluebird support.

We encourage you to subscribe to our email list for news and updates.

Updated Dec. 14, 2023, at 11:09 a.m. EST

Please note: A previous version of this FAQ incorrectly stated that Casgevy is approved for people ages 12 and up and Lyfgenia is approved for those ages 12 to 50. This statement has been corrected to note that both Casgevy and Lyfgenia are approved for people ages 12 and up.

Gene Therapy is Approved!

We are very excited to share that today, Dec. 8, the Food and Drug Administration approved two gene therapies to treat sickle cell disease! These potentially curative therapies are the first treatments of their kind available to individuals with SCD. We are heartened by this approval and are proud to support our community during this milestone moment. SCDAA will be releasing a full statement and additional information for patients and caregivers soon. To learn more about these approvals, click here.

 

 

CDC SCD Pregnancy Fact Sheets

Learn more about how to stay healthy leading up to, during and after a pregnancy with these newly developed fact sheets from the Centers for Disease Control and Prevention (CDC), the Foundation for Women & Girls with Blood Disorders, the American Society of Hematology and the Sickle Cell Reproductive Health Education Directive.

NOW IN SPANISH!