Living With Sickle Cell Disease, Researcher Finds a Lifeline in Medicaid

Ronisha Edwards-Elliott, a researcher and advocate, was diagnosed with sickle cell disease (SCD) at birth through newborn screening. As a child, she depended on Medicaid to get access to the care she needed.

Once she turned 18, Ronisha lost her Medicaid coverage and went uninsured for two years. She did her best to manage her health on her own, but it wasn’t enough, as a severe pain crisis forced her into the emergency department and nearly cost her life. This experience pushed her to re-enroll in Medicaid. For the next five years, with reliable access to medications and specialists, her health stabilized and improved.

Now, Ronisha leads research focused on improving the transition from pediatric to adult care for people with SCD. She helps adolescents understand their disease, the health care system, and how to advocate for themselves. Ronisha’s program was originally supported through funding connected to Medicaid, but with upcoming cuts, her current grant is set to expire at the end of 2025. Reductions to NIH research funding coupled with heightened scrutiny of issues related to health equity further threaten her program’s future.

Medicaid has played an essential role in Ronisha’s life and career as she works to improve the experiences of others living with the disease. Today, more than half of people living with SCD in the U.S. depend on Medicaid or the Children's Health Insurance Program for the care they need. Cuts to Medicaid not only threaten their health and well-being, but also programs such as Ronisha’s that help them better understand and manage their symptoms.

“Without access to insurance, SCD can not only be costly, but life-threatening,” Ronisha said.