INDIANAPOLIS—Since 2013 people with Sickle Cell Disease and advocates have gathered at the statehouse to raise awareness about it. When advocacy first began, many people didn’t even know what the disease was. While times have changed, advocates say there is still a need for adjustments in care.
For adults that suffer from the disease, they are typically diagnosed as a kid. Care can be more challenging to come by, especially when it comes to the pain aspect of the disease.
"There is so much empathy and compassion for babies that have not asked for these diseases,” Jade Parker-Dinkins who is living with Sickle Cell Disease said. “Then when we transition into adult care, we lose that empathy. We fall into this umbrella of individuals that have fallen into the opioid crisis."
Sickle Cell Disease can be painful. According to the CDC, sickled cells traveling through small blood vessels can get stuck and block blood flow throughout the body. That causes pain. A pain crisis can start to suddenly be mild to severe and can last for any length of time.
11 year old Sekou Dolley knows that pain first hand. He says since living with the disease, he often times has to not be outside with his friends because it can trigger pain attacks or flare other symptoms.
"It's like getting stabbed in the arm with multiple needles,” Dolley said.
Sickle cell disease is genetic and most commonly found in people of color. According to the National Library of Medicine, black Americans were 32 percent less likely to receive pain care compared to their white counter parts. This creates problems for black Americans suffering with sickle cell disease.
Many people turn to the emergency room when pain episodes happen. But patients say that bias in American hospitals often causes them not to get the care they need.
"We need treatment within 60 minutes of less,” Parker-Dinkins said. “This is the difference between someone having a sickle cell crisis that they get to walk away from and one that they get a toe tag from.”
Advocates want lawmakers to increase funding in the state budget for Sickle Cell advocacy. They also want standardized care across the state.
Martin Center Sickle Cell Initiative has been operating in Indiana for over 50 years. They say the state dedicates around $750,000 a year to Sickle Cell awareness. They'd like to see that amount raise to two million dollars. With a budget like that, they could make strides in standardizing care and help more Hoosiers who suffer from the disease.
"Here in Indianapolis, it's good,” Gary Gibson the President and CEO of Martin Center Sickle Cell Initiative said. “Around the state it's not so good. So there are portions of the state or pockets of the state where care is nowhere near what it is here in Indianapolis and we want to see that change.”
No legislation has been brought forward on this topic this session. 2025 is a budget year where advocates hope more money will be dedicated to helping people live and cope with sickle cell disease. The National Institute of Healthsays 1,695 people live with SCD in Indiana.