Reliable transportation is essential to beginning treatment. In a memo on state obligations, the federal government said states must ensure necessary transportation and travel expenses for both patients and their caregivers.

Hsu, who is also a professor of pediatrics and director of the Pediatric Sickle Cell Center at the University of Illinois Chicago, said transportation and lodging costs are important to consider, as patients come from all over the state or cross state lines to get treatment.

Federal officials told Stateline that multiple states have expressed interest in participating but wouldn’t say which ones.

Illinois’ Medicaid agency told Stateline it intends to participate.

“People with sickle cell disease often confront barriers to accessing treatments that can improve their health outcomes, including the high costs and geographic challenges,” said spokesperson Jamie Munks. “Expanding access to these high-cost treatments can significantly improve the quality of life for people across Illinois who need them, and will contribute to a more equitable health care system overall.”

In Georgia, Democratic state Rep. Gloria Frazier told Stateline she is pushing her state Medicaid agency to enroll. But Frazier noted that because Georgia has not expanded Medicaid under the Affordable Care Act, many patients would miss out.

“I am urging them to definitely participate in the process,” she said. “If we want to really help cure this disease, it has to be affordable.”

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