Record numbers of patients and advocates from across the state of Georgia — which has the nation’s fourth-highest number of people with sickle cell disease (SCD) — turned out recently for the annual Sickle Cell Day at the State Capitol. The day’s annual meeting with legislators and healthcare providers is led by the Sickle Cell Foundation of Georgia (SCFG).
The event featured actor and activist Karon Joseph Riley, a former National Football League player who appears on Bounce TV’s “Saints & Sinners” and had a role in the OWN network’s “Ambitions” series. Riley, who has the sickle cell trait, became an SCFG spokesperson in memory of his mother, Angelina Irene Riley, who died from SCD in 2011.
Along with the SCFG, the Pfizer-sponsored meeting is hosted each year by lawmakers, healthcare providers, and patient support organizations. It brings together patients, families, and advocates to discuss challenges in patient care, to advocate for continued SCFG support, and to hear from those living with the inherited blood disease.
One major issue at the focus of this year’s meeting was access to specialty care. Only 8% of adults with SCD have a provider for their disease, and most patients have no health insurance, a press release said. According to hospital records, 3,908 patients who live in the metropolitan area of Atlanta, mostly adults, had 49,581 hospital and emergency department visits, which corresponds to an average of nearly 13 visits per patient related to SCD issues.
For treatment during a pain crisis, patients who live outside metropolitan Atlanta frequently drive more than an hour. The one-way trip is even longer if public transportation is used. For these patients, even routine healthcare can be challenging to obtain.
“Unfortunately, far too many adults with sickle cell disease rely on emergency rooms for care,” Deb McGhee McCrary, the foundation’s president and CEO, said in the release.
Among Georgia’s 159 counties, 130 or 81% are designated as “medically underserved areas” and 90 census tracts are named as “health professional shortage areas” for regular primary care providers. The SCFG is launching new support centers to help bridge the treatment gap.
“Through these new Sickle Cell Support Centers that the foundation is opening, aided by technology, adult SCD patients have access to a hematologist, and through partnerships with federally qualified health centers, they can access primary care, whether insured or not,” McCrary said.
In addition, the foundation and Georgia’s Department of Public Health are sponsoring sickle cell education workshops for non-specialty providers with the aim of improving care and outcomes in Georgia, where 40% of SCD cases are concentrated in Fulton, DeKalb, Clayton, Cobb and Gwinnet counties.
Joining Riley as a Sickle Cell Day speaker was renowned disease expert James Eckman, MD. Eckman cited recently approved SCD treatments Oxbryta (voxelotor), developed by Global Blood Therapeutics, and Adakveo (crizanlizumab), developed by Novartis.
Other speakers were SCFG Sickle Cell Poster Child Kemar Vernon, and Maurice Franklin, a parent of a child with SCD and of another who recently died from the disease.
“Every year, your attendance for Sickle Cell Day at the Capitol grows more and more, and that is vitally important,” said Gloria Frazier, a state representative who presented a legislative resolution naming Sickle Cell Day in Georgia. “Your testimony and presence makes a compelling case for supporting sickle cell in Georgia.”
Founded in 1971, the nonprofit Sickle Cell Foundation of Georgia supports SCD patients through education and programming. In the United States, approximately 70,000 to 100,000 residents have SCD, according to the American Society of Hematology.
The 41st Sickle Cell Road Race/Walk to support the mission of the Sickle Cell Foundation of Georgia will take place on Saturday, April 11. Visit here to register.
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