INDIANAPOLIS— On Monday, Hoosiers from across the state were at the Indiana State House for Sickle Cell Advocacy Day. They wanted to shine a light on the financial burdens and medical coverage needs of those living with sickle cell disease.
More than 1,700 people in Indiana have sickle cell disease. It’s a a rare, lifelong blood disorder where red blood cells become hard, sticky and C-shaped leading to blood flow blockages that can result in organ damage, serious infections or even stroke.
Lena Harvey is a sickle cell advocate, she was diagnosed with the disease at the age of four. Harvey says she faces issues like chronic fatigue, has to take daily medications, and visits the doctor about twice a month. She says many sickle cell patients have lower incomes and pay almost four times more in out-of-pocket medical costs over their lifetimes.
“Most sickle cell patients like myself are unable, just physically unable to keep a full-time job and a lot of us know that even the ones that are healthy enough to work full-time jobs a lot of times still can’t afford health care. So, how bad must it be for someone like me who can not put their bodies on the line to work one or more jobs just to have health care,” said Harvey.
Experts say patients often forgo healthcare to avoid those out-of-pocket expenses. They also age out of the supplemental medical coverage provided by Indiana Children’s Special Health Care Services at the age of 21. Advocates are pushing to extend that age limit.
