Category Archives: News

CMS Expands Access to the CGT Access Model

On July 15, 2025, the Centers for Medicare & Medicaid Services (CMS) announced expansions to the Cell and Gene Therapy (CGT) Access Model.

“The Sickle Cell Disease Association of America, Inc., is excited by the news that CMS has reached agreements with drug manufacturers to provide gene therapies to treat sickle cell disease to Medicaid recipients and that 33 states, plus the District of Columbia and Puerto Rico, have joined a program that ties Medicaid payments to patient outcomes,” says Dr. Edward Donnell Ivy, SCDAA chief medical officer. “For a long time, the only disease-modifying therapy for sickle cell disease was hydroxyurea, which doesn’t work for many sickle cell patients and leaves the community with limited options for care. The new gene therapies that were approved by the FDA in 2023 will allow individuals the opportunity for transformative therapy with potential cure. However, access to this new therapy might be limited by the cost of the treatment, so it is important for CMS and other stakeholders to get involved in ensuring access to this therapy, particularly since it has been demonstrated that a large portion of the sickle cell population relies on Medicaid for access to care.”

To learn more, click here to read the CMS statement.

SCDAA Statement on the Federal Budget Bill

On July 4, President Trump signed the One Big Beautiful Bill Act into law. SCDAA shares the concerns of many in our SCD community regarding the impact that this act will have on the Medicaid program, access to care and health care overall for sickle cell warriors. We are in the process of carefully analyzing the bill to fully understand its effects and develop guidance for warriors, providers, caregivers and families moving forward. We will keep you updated in the next few weeks with more information and proposed next steps.

SCDAA will continue to advocate on both the federal and state levels as provisions of the law are implemented. Thanks to the many of you who engaged in advocacy on the bill. We are a resilient community and our work must continue.

In Memory of James E. Rawlings


With great sadness, SCDAA shares the news of the passing of James E. Rawlings, president and CEO of Michelle’s House (SCDAA, CT), on Sunday, May 25. In addition to leading one of our oldest member organizations, Mr. Rawlings was a past SCDAA National board member and served as treasurer from 2004-2007. In a statement, Michelle’s House said:

“For over 30 years, Mr. Rawlings was a towering figure in the fight against sickle cell disease and a steadfast advocate in the broader public health landscape. His unwavering dedication, passion and advocacy were rooted in a profound commitment to breaking through more than a century of neglect and stagnation surrounding sickle cell disease, particularly as it affects Black and Brown communities.

Mr. Rawlings championed the voices of the underserved and unrecognized. His tireless efforts, his leadership and his fierce compassion have left an indelible mark not only on our organization but also on the lives of countless individuals and families.

This is an immeasurable loss — not only for the sickle cell community, but for all who had the honor of knowing and working alongside him. We extend our deepest condolences, prayers, and well-wishes to the Rawlings family during this difficult time.

May his legacy of justice, equity and compassion continue to inspire us all.”

Services will be held on Wednesday, June 4, at Christ Church in New Haven, Connecticut (Viewing 10 a.m. – 12 p.m. ET, service at 12:15 p.m. ET). SCDAA sends our sincere condolences to Mr. Rawlings’ family, friends and colleagues as we mourn this tremendous loss.

Sickle Cell Disease Association names membership manager


The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Joel Nepomuceno as membership engagement manager. He brings experience in membership strategy, community building, project management and marketing.

Prior to joining the Sickle Cell Disease Association of America Inc., Nepomuceno served as the director of membership and development operations at Research!America, which advocates for increased federal health and biomedical research funding. During his tenure, he helped advance the organization’s mission by developing its membership strategy, focusing on member engagement and communication.

Previously, Nepomuceno was the membership manager at the National Council for Mental Wellbeing. While there, he worked to improve the member experience, oversaw database management and provided customer service to more than 3,400 organizational members.

Nepomuceno holds a bachelor’s degree in communications from the University of Maryland, College Park. He lives in Gaithersburg, Maryland.

In Memory of Dr. Winfred Wang


SCDAA mourns the loss of prominent pediatric hematologist and sickle cell provider Dr. Winfred Wang, who passed away on April 9 at the age of 82. Dr. Wang practiced at St. Jude Children’s Research Hospital in Memphis, Tennessee. He helped to pioneer the use of hydroxyurea for children with sickle cell disease through his research, including the 2011 BABY HUG study. “I remember him presenting the BABY HUG data at the American Society of Pediatric Hematology/Oncology conference in 2010,” says Dr. Crawford Strunk, SCDAA vice chief medical officer. “It was like he was giving us our marching orders. He was such a great advocate, clinician and researcher. He will surely be missed.”

SCDAA board member and former chief medical officer Dr. Lewis Hsu added, “He was quiet and humble in his leadership. He and his team were good at developing ways to explain to children and parents what hydroxyurea was doing.”

SCDAA sends our deepest condolences to Dr. Wang’s friends and family. We will remember all that he did for the sickle cell community as we honor his legacy.

In Memory of Dr. Gwendolyn Poles-Corker


With great sadness, SCDAA shares the news of the loss of Dr. Gwendolyn Poles-Corker on April 8, 2025. The 71-year-old was a trailblazing physician, educator, advocate and sickle cell warrior. She passed away from complications of her disease, but she never let it hold her back. She overcame the odds and brought healing and care to her patients and community. Dr. Poles-Corker supported SCDAA’s work and served as a member of the SCDAA Advisory Board until her passing. Her guidance and leadership will be deeply missed.

To read more about Dr. Poles-Corker’s life and legacy, visit the links below.

Trailblazing Harrisburg doctor with sickle cell who fought for patient improvements dies – pennlive.com

Gwendolyn Agnis Poles-Corker Obituary April 8, 2025 – Hooper Memorial Home Inc.

SCDAA names events manager

The Sickle Cell Disease Association of America Inc., a national nonprofit membership organization that advocates for people affected by sickle cell disease, named Natasha Thomas as events and special projects manager. Thomas previously worked for the association, including as an events consultant for the last three years.

In her new position, Thomas will manage the planning, logistics, operations and execution of the association’s events, including the annual national convention, annual Warrior Walkathon and other programs and special initiatives. 

Previously, Thomas served as deputy director of Amara Legal Center, a legal aid organization serving the Washington, D.C., region. She supervised organizational communications, supported grant applications and fundraising and performed human resources and finance functions. She joined Amara Legal Center as operations and resource manager.

For 14 years from 2007 to 2021, Thomas served in different roles with the Sickle Cell Disease Association of America Inc. Her most recent position was development and special events coordinator, where she supported association operations, project management, human resources and office management. She previously held the positions of member services manager and project associate.

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 on the Measles Outbreak

SCDAA is aware of and monitoring the measles outbreaks that have been reported in several states. There is a fair amount of confusion and misinformation online and in the media about how to protect yourself and your family during this time. Parents of young children may be feeling especially anxious and overwhelmed, particularly if your child has sickle cell disease, which may increase the risk of a weaker immune system and infection. It is worth noting that we have had few cases of measles and sickle cell disease in recent U.S. memory.

Measles can cause a fever and rash that starts on the head and moves to the body, arms and legs. It is highly contagious and can be spread from an infected person to their friends and family. As with any infection, if a fever is present, prompt evaluation and treatment may be necessary. In addition, parents can help their children stay hydrated and monitor for an acute pain episode.

SCDAA reminds the sickle cell community that the best way to prevent the measles is through routine vaccinations These include the MMR vaccine and vaccinations for pneumococcal infections. If you and your family have been appropriately vaccinated for measles (receiving two vaccinations at least four weeks apart), the chance that you will catch the measles is low. If you or your family are behind on your vaccinations, now is the time to get up to date! To learn more about the measles and keeping your children safe, click here.

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