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Sickle Cell advocates calling on state legislature for more funding and resources to treat the disease

“Even if it doesn't affect you, you’re seeing us. You’re seeing that, you know, it exists."
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Posted at 5:39 PM, Feb 27, 2023

INDIANAPOLIS — There are more the 1,600 people living with sickle cell disease statewide. Most are from the Black and Brown communities.

Across the country, one in every 500 African American children will have sickle cell disease, but access to care is hard to come by with only about a dozen providers across Indiana.

Providers, advocates, and patients all gathered at the statehouse Monday to discuss solutions and advocate for more access. Tevin Coleman, a former star runningback at Indiana University and now NFL player, joined the conversation with his wife Akilah. They have a daughter that is currently suffering from the disease.

"She got out of the hospital, she was healthy and she came to the game where I had four touchdowns,” Coleman said with tears in his eyes. “She just inspired me and motivated me to do that.“

Coleman is no stranger to Sickle Cell Disease. Both he and his wife are carriers of the trait.

Sickle Cell is a genetic blood disorder that affects red blood cells and can cause extreme pain, swelling and infections. Coleman himself had issues with the disease when he was playing football at IU. Now that his daughter has the disease, the family have become advocates.

"It's going to show the parents that they have someone to relate to and it's going to show the lawmakers and decision makers hey, like this is real,” Akilah Coleman said. “Even if it doesn't affect you, you’re seeing us. You’re seeing that, you know, it exists and we still need a lot of help to get it along the way."

Access to care for Sickle Cell Disease is hard to come by. Providers of that care say that has a lot to do with disparities in our health care for Black and brown individuals.

"When our patients walk into the emergency room, especially if they are coming in with pain, a lot of times they are questioned about how bad their pain actually is, do they really need the pain medication they are saying works for them?" Dr. Seethal Jacob, the Director of the Pediatric Sickle Cell Program at Riley Hospital for Children, said.

That line of questioning is something Khajae Henry is familiar with. She is a Sickle Cell patient.

"Unfortunately, I have had my own experience where I am in the hospital and I am informing the doctors and my healthcare team that I'm experiencing excruciating pain and they are choosing not to believe me," Henry said.

She didn’t know she was a carrier from birth because she was born in Jamaica. There, sickle cell tests from birth aren't as common as they are in the U.S.

Experiences like Henry's are why doctors and patients alike say investing in more resources to treat this chronic disease is vital.

"We don't have the resources to reach every patient in the state and we really need to the state to support us in expanding access to care," Dr. Andrew O'Brian. the Director of the Adult Sickle Cell Program at IU Health. said.

Democratic representative Greg Porter proposed adding $1.5 million a year to the bi-annual budget to invest in sickle cell initiatives, but that conversation died.

There are several resources in Indiana for people who are currently suffering from the chronic disease:

Resources

- Indiana Hemophilia & Thrombosis Center

- Indiana Sickle Cell Consortium

- Martin Center Sickle Cell Initiative

READ MORE: ‘Help one another’: Indy doctor, patient with Sickle Cell push for Black blood donors | Indiana girl is raising awareness about Sickle Cell Disease through her own experience