Many States Face Problems With Cost of Health Care for Children With Rare Illnesses
Many states are struggling to continue to pay for treatment of people with rare terminal and incurable illnesses, as many such children are living longer with conditions that "once were often fatal by adolescence," the AP/Las Vegas Sun reports.
According to the AP/Sun, an example of the situation is cystic fibrosis. Historically, children with the disease have died in their teenage years and available treatments were not expensive. However, the median life expectancy for a person with cystic fibrosis now is 33 years and the treatment allowing that life span can cost $2,000 per dose, the AP/Sun reports.
The situation is expected to worsen with the advancement of technology and early identification of genetic diseases, Betsy Anderson of the Boston-based advocacy group Family Voices said. According to the AP/Sun, Ohio, Idaho, Virginia and Minnesota are among the states considering eliminating or reducing funding for such programs.
In Ohio, a program through the state Department of Health covers hospital stays, copayments for prescriptions and physician visits for about 21,000 children and adults with 80 terminal illnesses -- including cerebral palsy, diabetes and spina bifida -- that were present at birth. The state now requires about 5,000 families to pay more for their children to receive benefits.
Idaho also is requiring children's families to contribute more and is considering ending a program for adults with rare conditions. Further, Virginia and other states are trying to enroll some children in Medicaid.
To continue to receive state aid for their children, many families have taken on extra jobs or have tried to reduce their income level to qualify for Medicaid, Jim Bryant, director Ohio's program, said, adding, "We are concerned about it, but we have limited resources" (Spencer, AP/Las Vegas Sun, 3/12).