Hoosiers from across the state will gather at the Indiana State Capitol on Monday, Feb. 2, to call attention to the urgent and time-sensitive needs of people living with sickle cell disease.
The advocacy event, held from 11 a.m. to 2 p.m. in the second-floor south atrium, is organized around the theme “Sickle Cell Can’t Wait.” Advocates say the message underscores the need for timely resources and policy attention for Hoosiers living with the lifelong blood disorder, which disproportionately affects Black communities and is often marked by gaps in health care access and outcomes.
Advocates point to persistent disparities facing Hoosiers with sickle cell disease. On average, patients wait between 50 and 90 minutes to receive pain management in emergency rooms. The average life expectancy for people with the condition is 52.6 years. In Indiana, patients also age out of supplemental medical coverage provided by Indiana Children’s Special Health Care Services at age 21, despite sickle cell disease being a lifelong condition.
Sickle cell disease causes red blood cells to become hard, sticky and C-shaped, leading to restricted blood flow. These blockages can result in severe pain, organ damage, serious infections and stroke. While more than 1,700 Hoosiers are currently living with sickle cell disease, an even greater number carry the sickle cell trait and may unknowingly pass the condition on to their children.
Marion and Lake counties have the highest incidence of sickle cell disease in the state. Statewide, 87 percent of people living with the disease are Black, and approximately one in every 446 babies born into the Black population has sickle cell disease. Nearly 70 percent of patients rely on Medicaid as their primary form of insurance.
The sickle cell team from Innovative Hematology, along with partners from across Indiana, will represent Hoosiers living with the disease during Advocacy Day. Physicians, social workers and individuals directly affected by sickle cell disease are expected to be available to discuss why advocates say the condition cannot wait for action.
Blood donations and blood type testing will be offered during the event from 11 a.m. to 1:30 p.m. Hoosiers living with sickle cell disease, along with supporters, family and friends, can sign up to participate in Advocacy Day through eventbrite.com/e/sickle-cell-advocacy-day-2026-tickets-1977739685639?aff=oddtdtcreator.
This reporting is made possible by a grant from the Indianapolis African-American Quality of Life Initiative, empowering our community with essential health insights. https://iaaqli.org/
Contact Health & Environmental Reporter Hanna Rauworth at 317-762-7854 or follow her on Instagram at @hanna.rauworth.
Hanna Rauworth is the Health & Environmental Reporter for the Indianapolis Recorder Newspaper, where she covers topics at the intersection of public health, environmental issues, and community impact. With a commitment to storytelling that informs and empowers, she strives to highlight the challenges and solutions shaping the well-being of Indianapolis residents.
