ATLANTA, Feb. 11, 2020 /PRNewswire/ -- Sporting a red tie in support of sickle cell, actor/activist Karon Joseph Riley rallied recently before Georgia lawmakers along with record numbers of sickle cell patients and advocates from across the state for Sickle Cell Day at the State Capitol. Sickle Cell Disease (SCD) is the most frequently diagnosed genetic disorder and Georgia has the fourth highest number of persons with Sickle Cell Disease in the nation. Riley, a former NFL player who has sickle cell trait, appears on the hit OWN series "Ambitions" and Bounce TV's "Saints & Sinners". Riley became celebrity spokesperson for the Sickle Cell Foundation of GA, Inc. (SCFG) in memory of his mother Angelina Irene Riley, who lived a painful life with sickle cell disease until she transitioned in 2011.
SCD impacts persons of all ages and is disproportionately found among African Americans and people of color. Sickle cell disease is characterized by pain episodes and severe organ damage. Sickle cell trait is a medical condition but is not, and does not "turn into" sickle cell disease, insists myth-busting SCFG Medical Director Otis Powell, MD. Sickle cell is inherited from parents so awareness of your sickle status is important, he says.
The Sickle Cell Foundation of Georgia, Inc. hosts this annual meeting with legislators, health providers, and sickle cell support groups. This popular event, sponsored in part by Pfizer, brings patients, families, and advocates together with Georgia lawmakers to share their experiences regarding sickle cell and health care challenges statewide. Hospital billing records show that 3,908 metro Atlantans, 73.9% of whom were adults, had 49,581 hospital and ER visits – an average of nearly 13 visits each for problems related to Sickle Cell Disease. As a group, only 8% of adults with Sickle Cell Disease report having a healthcare provider for their disease and the majority of adult SCD patients do not have health insurance.
According to the Centers for Disease Control and National Institutes of Health, 8,427 or 40% of all cases in Georgia are linked to five metropolitan Atlanta counties, (Fulton, DeKalb, Clayton, Cobb, and Gwinnet). Individuals with sickle cell reside in all 159 counties. Of the 159 counties, 130 or 81% are designated as Medically Underserved Areas and 90 census tracts are designated as Health Professional Shortage Areas for regular primary care providers. According to a host of patient testimonials, these disparities make getting even routine healthcare challenging for patients to obtain. Advocates further explained that patients outside of Metropolitan Atlanta often drive more than one hour, one-way during a pain crisis, to obtain health care. The average one-way travel time on public transportation takes even longer, they said.
Throughout the day, patients meeting with their hometown legislators cited access to specialty SCD care as the major challenge and urged continued funding for several SCFG programs that are helping. Georgia SCD patients may not qualify for Medicaid unless they are determined to be disabled, pregnant, or a single woman with children.
"Unfortunately, far too many adults with Sickle Cell Disease rely on emergency rooms for care," said Deb McGhee McCrary, SCFG's President and CEO. "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. In addition, she said that the Foundation and GA DPH are sponsoring Sickle Cell education workshops for non-specialty providers to improve care and outcomes throughout the state.
Joining Riley as Capitol Day speakers were: East Point Mayor Deana Holiday Ingraham, SCFG's annual race partner; world recognized sickle cell expert Dr. James Eckman; SCFGs GA Sickle Cell Poster Child Kemar Vernon; and Maurice Ficklin, a parent of children with sickle cell, including a young adult son Markel Ficklin who recently transitioned.
Advocates were recognized from the House floor and appreciated the support of legislators who wore red for the occasion. During his remarks, Dr. Eckman noted the launch of two new FDA approved drugs for SCD by GBT and Novartis. Rep. Gloria Frazier, a longtime champion for SCD, presented a bipartisan resolution naming Sickle Cell Day in Georgia.
Advocates were individually greeted by a cascade of members before lunch. Joining Rep Gloria Frazier were Representatives: Roger Bruce, Kim Schofield, Karen Bennett, El Mahdi Holly, Calvin Smyre, Al Williams, Terri Anulewicz, Erick Allen, DarShun Kendrick, Meriam Paris, Sandra Scott, Carolyn Hugley, Camia Hopson, Bob Trammell, Erica Thomas, Mike Glanton, David Wilkerson, Dexter Sharper, David Dreyer, Derrick Jackson, Gregg Kennard, and Dexter Sharper. Senators included: Renee S. Unterman, Lester G. Jackson, Donzella James, Tonya Anderson, and Michael A. "Doc" Rhett.
"Every year your attendance for Sickle Cell Day at the Capitol grows more and more and that is vitally important," said Rep. Frazier. "Your testimony and presence makes a compelling case for supporting sickle cell in Georgia."
Worldwide the numbers of people affected by sickle cell are staggering, with as many as four hundred million projected by the year 2050. Well over a quarter million babies are born with the disease each year. In the United States, there are at least 100,000 individuals living with SCD, classified as a rare disease by federal agencies.
For more information about sickle cell in Georgia, contact the Sickle Cell Foundation of Georgia, Inc. at www.sicklecellga.org. Sign up for the annual sickle cell race/walk to be held in East Point, GA at Tri Cities HS on Saturday, April 11th. Registration now open www.sicklecellrace.com .
About Sickle Cell Foundation of Georgia: Founded in 1971 by two Atlanta physicians – the late Nelson McGhee, Jr and Delutha H. King, the Sickle Cell Foundation of Georgia, Inc. is a statewide nonprofit advocating for and serving children and adults with Sickle Cell and other abnormal hemoglobin. The Foundation hosts Camp New Hope, Georgia's first and only medical-supervised summer camp for children ages 6-17 with sickle cell and partners with clinics, hospitals and support groups throughout the state. Visit sicklecellga.org.
CONTACT: Tabatha McGee 404.755.1641
SOURCE Sickle Cell Foundation of Georgia, Inc.