INDIANAPOLIS (WISH) — Roughly 100,000 Americans live with sickle cell disease.
The Centers for Disease Control and Preventable reports complications from the group of inherited red blood cell disorders can be deadly.
In just a few days, state law will change to send more help to Hoosiers living with the disease.
“It’s really severe, intense pain,” said Courtney Stinnett, who lives with sickle cell disease. “It lasts for days.”
Diagnosed at 2 years old, Stinnett went years without a sickle cell flare up until Easter weekend.
“By 2 o’clock in the morning, I couldn’t take it anymore.” Stinnett recalled. “I had to go to the hospital.”
Stinnett said she feels like this new law will save somebody’s life.
“It’s so awesome,” Stinnett said with a smile. “We need it. It’s a dream come true.”
She’s not alone. The people who run the Martin Center Sickle Cell initiative estimate from 1,100-1,600 Hoosiers live with the genetic disease.
“Sickle cell disease is a blood disorder and it can affect anyone of any race, ethnicity, nationality,” said Gary Gibson, the president and CEO of the Martin Center Sickle Cell Initiative.
On Monday, state law changes to require that the Indiana State Department of Health to expand sickle cell care to Indiana’s underserved areas. The expansion includes mental health care, pain management and help with paying for treatment.
The new law also calls for creating sickle cell disease centers and an outreach program for patients and providers.
“The state of Indiana Health Department has been doing a great job and is in fact a leader in terms of what it provides to sickle cell currently; however, it’s not enough.” Gibson said.
So, the new law comes with a $260,000 per-year boost for treatment and education. Treatments can help relieve symptoms, lessen complications and prolong life.
“We’re really thrilled with it,” Gibson said, “that it offers the opportunity to provide more counseling. It offers the opportunity to establish what’s known as adult infusion centers.”
Gibson said the state will have to decide which organizations will be part of the expansion. He said the Martin Center hopes to establish smaller sickle cell centers in the Gary and Fort Wayne areas.