Sickle Cell Advocacy Day at the Statehouse
INDIANAPOLIS — The second floor of the Indiana Statehouse was filled with “Warriors” on Monday as more than 1,700 Hoosiers living with sickle cell disease (SCD) sent a clear message to lawmakers: the time for waiting is over.
The “Sickle Cell Can’t Wait” Advocacy Day brought together patients, families, and medical experts from Innovative Hematology to highlight the stark health disparities facing those with the lifelong blood disorder.
Sickle cell disease, a genetic condition that causes red blood cells to become hard and C-shaped, often leads to excruciating pain crises, organ damage, and stroke. In Indiana, the struggle is compounded by a healthcare system that advocates say is failing to keep pace with patient needs.
Data presented at the rally revealed that Indiana SCD patients wait an average of 50 to 90 minutes for pain management in emergency rooms—significantly longer than the national average for other emergency conditions. Furthermore, the average life expectancy for a Hoosier with the disease is just 52.6 years.
“I am faced with choices each and every day that affect my health,” said Isaiah Fairrow, a sickle cell warrior who spoke during the ceremony. “I am affected by each choice that I make because I could end up in the hospital… sadly, that choice could be fatal if I do not have the proper healthcare system.”
A “Long Staircase of Advocacy”
Fairrow described the event as the first step in a “long staircase” toward justice. He specifically pointed to recent federal shifts that have threatened the stability of the SCD community.
“In 2025, the federal government cut so many issues with research and funding… Cutting Medicare, cutting things that sets us back,” Fairrow told the crowd. “Research is important because we are able to find cures. We’re able to find more medicine. But without the funding and the proper aid, we’re not able to do that.”
The community is particularly focused on the “cliff” that occurs at age 21. Currently, Hoosiers with SCD age out of supplemental medical coverage provided by Indiana Children’s Special Health Care Services, despite the disease being a permanent, lifelong condition.
Disparities by the Numbers
The impact of the disease is felt most acutely in Indiana’s urban centers, with Marion and Lake Counties reporting the highest incidence rates in the state. The crisis is also deeply tied to racial and economic disparities: 87% of Hoosiers with sickle cell disease are Black, and approximately one in every 446 babies born into the Black population is diagnosed with the condition. Additionally, the vast majority of these patients — roughly 69% — rely on Medicaid as their primary form of insurance, making them particularly vulnerable to the funding cuts and policy changes Isaiah highlighted in his address.
A Call to Action
Beyond legislative funding, Fairrow urged those in attendance to take the message back to their own neighborhoods, churches, and schools. He also issued a direct challenge to the lawmakers watching from the hallways of the Statehouse.
“I’m here to tell and alert my lawmakers here that I’m watching, that we’re watching,” he said. “Action has to happen right now. It can’t be in the back lot for later years. I cannot wait any longer.”
