Kids Face Hurdles to Sickle Cell Testing, Treatment

Children with sickle cell anemia face many "hurdles" in obtaining treatment for their condition, the Contra Costa Times reports. A "new wave" of strategies to detect and treat the disease in young children underway, but these efforts are often thwarted by a "health care system that limits access to new treatments and insurance companies that are reluctant to pony up money for necessary testing," the Times reports. Dr. Elliot Vichinsky, director of the Sickle Cell Center at Children's Hospital in Oakland, Calif., said, "I think we're in a renaissance of this disease, which can modify it or cure it, but we need to develop a health care system that enables us to do this." Vichinsky added that by age 6, 25% of children with sickle cell have evidence of blockages in small blood vessels located in the brain. These blockages can cause stroke, brain damage or paralysis, and children can be left with learning disabilities.

Doctors can perform "low-cost neurocognitive tests" to determine whether brain damage has occurred and how to treat it, but insurance companies are "reluctant to pay" for the screenings, Vichinsky said. He added, "Insurance companies say this is a school test, not for a medical problem; therefore, it doesn't fall under the auspices of insurance services. The schools are overwhelmed and underfunded and don't do the testing. It's an ongoing horrible situation." Meanwhile, "falling reimbursements" from public and private insurers to hospitals and providers have left the future of coverage for such tests and treatment "mixed," the Times reports. In addition, research for sickle cell anemia is "underfunded," with racial disparities influencing the allocation of money to study the disease, according to Vichinsky. Sickle cell anemia affects about one in every 600 African American newborns and received about $50 million last year from the NIH. However, cystic fibrosis, which affects about one in every 3,300 white babies, received $81 million in research funds. Vichinsky said that minorities typically lack the "political and economic power" to obtain funding and support for "the health care they need."

Families themselves often provide obstacles to treatment, with many offering "spotty participation" in therapy programs, the Times reports. Ekua Hackney-Stephens, a pediatric nurse practitioner, said that couples planning to have children should undergo genetic counseling to determine whether they are at risk of having a child with sickle-cell. And parents with children who have sickle cell anemia should receive "constant education" on how to monitor the disease. However, Vichinsky said, unless reimbursement rates improve and access to care increases, treatment and testing options will remain out of reach for many families. "The sad commentary is that while we have the ability to prevent problems ... [a]ccess to this kind of care is actually less than it was before," he said (Hoban, Contra Costa Times, 3/26).