INDIANAPOLIS (WISH) — Indiana is adding an extra $500,000 in grant funding to support Hoosiers living with sickle cell disease, which many say is a vital tool to support education and attack health disparities.
Sickle cell is a condition most often found in Black people. It’s a disease marked by sickle-shaped blood cells that don’t flow smoothly, causing a backup in blood flow and debilitating pain.
In Indiana, around 87% of people living with sickle cell are Black or African-American. Many of the health disparities we often see across the board are present in sickle cell treatment.
Lena Harvey is one of the many people living with sickle cell, and has battled the disease since she was 4 years old.
“I’m an abled-bodied, chronic illness warrior, which to some people sounds like it’s contradictory,” Harvey said. “Patients are finding it very difficult to get the care that they deserve and require based on very superficial things like what a person can see just looking at them.”
Harvey is part of a growing team of people, organizations, and legislators pushing for more education and resources on the disease. The team’s relentless work helped make the Lifelong Sickle Cell Collaborative Services Grant a reality.
“The health equity situation is really sad and you’re exactly right. It affects people of color disproportionately,” Lisa Hoffman with Indiana Hemophilia & Thrombosis Center said.
It’s a two-year $500,000 grant for the state, expanding education and resources for the 1,700 people in the state living with Sickle Cell.
“It’s a very underserved population. The number of funding streams coming in for folks affected with sickle cell disease is disproportionate to the amount of services that need to be provided,” Hoffman said.
The money will support statewide comprehensive care, allowing partnering organizations to increase specialty care, mental health assistance, and telehealth access.
It will also work to raise awareness and education for the general public and those in the medical field.
“You don’t look sick. In those types of ideas and thought formations, those are very dangerous,” said Harvey.
