Exciting News: the Maryland Department of Health has officially accredited SCDAA’s Community Health Worker Training! This accolade will allow our program to have an even bigger impact in the state. Students who have successfully completed our training program can now apply for CHW certification with the Maryland Department of Health. Congrats to our CHW team on this accomplishment!
Category Archives: News
P.O.W.E.R. CHW Award Nominations are Now Open!
Each year during the SCDAA Annual National Convention, we recognize the amazing work performed by community health workers (CHWs) with the SCDAA P.O.W.E.R. CHW Award. The CHW Award honors exemplary performance by individuals who have been identified by their supervisors and peers as having consistently excelled in their positions and demonstrated integrity and a strong commitment to the sickle cell disease (SCD) community and values of the community health worker profession.
If you would like to nominate a CHW for the award, please fill out the below document and submit to the SCDAA Senior Community Impact & Engagement Manager Kevin Amado at kamado@sicklecelldisease.org. The deadline for submission is Friday, August 29.
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.
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.