Hoosiers unite for Sickle Cell Advocacy Day
02/15/2024
By: Jade Jackson
Hoosiers from across the state gathered at the Indiana State Capitol to encourage lawmakers to consider the needs of Hoosiers living with sickle cell disease.
The rare inherited blood disorder occurs when 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.
According to the Indiana Sickle Cell Data Collection Program, Black Hoosiers make up 87% of people with the disease in Indiana; they often experience disparities in health care.
“We are here for one mission. That is health equity. Every human being deserves proper health care. There is nothing that we should hold back, especially for a group of people that are already born with a heavy load,” said Lena Harvey, a self-described sickle cell warrior.
“Emergency Rooms are not equipped or designed for critical pain care that comes with sickle cell carriers. The same way that sickle cells clog our bodies is the way patients are clogging emergency rooms across the country.”
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.
It is estimated that even more Hoosiers carry the sickle cell trait and could pass this life-threatening disease on to their children.
Sickle Cell Advocacy Day
Representatives at the Statehouse from the Indiana Hemophilia & Thrombosis Center (IHTC) along with other Indiana partners voiced support for the more than 1,600 Hoosiers who live with sickle cell disease.
“We’re advocating for more resources in the community, say, for example, mental health services or co-pain therapy services. We’re advocating for better coverage through the state insurance program,” said Kisha Hampton with IHTC.
Advocates want lawmakers to increase funding in the state budget for sickle cell advocacy. They also want standardized care across the state.
The Martin Center Sickle Cell Initiative has been operating in Indiana for over five decades.
The center said that the state dedicates around $750,000 a year to sickle cell awareness.
Advocating for better sickle cell resources
It would like to see that amount raise to two million dollars and see strides made in standardizing care to help more Hoosiers who suffer from the disease.
Advocates hope the next state budget will dedicate more funds to help people live and cope with sickle cell disease.
According to the National Institute of Health, Marion & Lake Counties have the highest cases of sickle cell disease in the state; 69% of Hoosiers with sickle cell disease have Medicaid as a primary form of insurance.
Giving blood is one way to help those with sickle cell disease and Harvey said that if blood donations were to rise by only 1% that would be enough to serve everybody struggling with the disease who would need a transfusion.
Over 200 people registered for the Sickle Cell Advocacy Day at the Statehouse.
No legislation has been brought forward for the current session specifically on the disease.