Improved treatments for sickle cell disease are extending the life expectancy of thousands of people in the United States, but many patients still lack adequate care.
A grant from the National Institutes of Health could help. It will fund a six-year study at eight medical centers, including Washington University in St. Louis, to identify the needs of local patients and find ways to meet them.
“We’ve known the cause of the disease… for about a hundred years. Yet we haven’t really had a huge number of advances,” said Dr. Allison King, a hematologist leading the research at Wash U. “These projects are going to study how we better educate people and help them adhere to taking the prescribed treatment.”
About 1,200 St. Louis-area residents live with sickle cell disease, a rare genetic blood disorder that causes episodes of severe pain. In the U.S., it most commonly affects African Americans. Medication to manage the symptoms can be out of reach for uninsured patients, advocates said. Sickle cell disease, on its own, is not considered a disability under Missouri’s Medicaid program, MO HealthNet. As a result, many patients who need regular medical care make too much to qualify for publicly-funded insurance. (Some illness-specific assistance is available, however).
At Washington University, the $4.3 million project will begin with a two-year needs assessment for patients in St. Louis, with the help of the Sickle Cell Association. The National Institutes of Health have granted $36 million to the program nationally.
“I’m very excited about it,” said Rosemary Britts, the group’s executive director. “What I’m hoping comes out of this is that we will be able to assess the needs of the sickle cell community to help them live the best life possible.”
Armed with that information, the consortium will develop protocols for hospitals, caregivers, and public institutions.
In St. Louis, King pointed to a lack of awareness of sickle cell disease among employers and health providers as an ongoing challenge. As St. Louis Public Radio reported last year, adult patients often say they’re denied pain medications in the emergency room. But even children with sickle cell have a hard time navigating schools that don’t understand their needs, King said.
“This disease can almost be seen as an invisible disability, because you wouldn’t know just looking at somebody that they have sickle cell,” King said. “They don’t know to probe a little bit deeper, as far as trying to figure out what the challenges are with learning and how to make special accommodations.”
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