This program, originally established for children with special medical needs, also assists many adults with cystic fibrosis (CF). As a result of the budget cut and changes to eligibility standards, adults will have trouble re-qualifying for this assistance, and many children with CF and their families will face prohibitive fees.
More than 1,300 Ohio residents have CF, a life-threatening genetic disease that affects the lungs and digestive system. In addition to those with CF, the cut will affect patients living with other chronic, terminal illnesses such as cerebral palsy, chronic pulmonary disease, craniofacial deformities, and spina bifida.
Since 1998, the BCMH budget has been reduced from $12 million to approximately $6 million. Eligibility changes instituted in 2003, combined with the proposed July 1, 2004 cuts, will affect more than 5,000 current BCMH beneficiaries. "BCMH is a program dedicated to helping working parents whose children have costly health care needs. However, with the new cut in eligibility, many CF patients with private insurance will face yearly payments of $12,000 to $20,000. They simply cannot afford these huge new medical bills and many will be forced to quit their jobs and go on Medicaid or seek institutional care for their children," said State Representative Diana Fessler (R).
The cuts also could increase state costs if CF patients no longer receive adequate treatment. "Rather than reducing health care expenses, these changes could lead to increased hospitalization costs for people with CF because of insufficient early medical care," said Dr. Bruce Barnett, associate director for the Northwest Ohio Pediatric Pulmonary and Cystic Fibrosis Center.
When funds were originally extended to adults with CF through the BCMH a few decades ago, most people with CF did not live past childhood. Since then, the median life expectancy for individuals with CF has increased to the early 30s. More than 40 percent of people with CF in the United States are 18 years of age or older, with many more on the brink of adulthood. While many people with CF do not live into their thirties, the number of adults with CF is growing.
"Many CF patients can look forward to having an active life including holding a job and raising a family," said Boomer Esiason, former Cincinnati Bengals quarterback, founder of the Boomer Esiason Foundation and father of a son who has CF. "The proposed cutbacks jeopardize this prospect, and the last thing we want is for these patients' life expectancies and quality of life to diminish."
Access to appropriate health care has made a critical difference in improving the longevity and quality of life for people with CF of all ages. Individuals with CF must take eight or more different medications each day - medications that digest food, thin the mucus that clogs the lungs, and fight lung infections. In addition to these medications, CF patients must follow a high-calorie diet in order to assure proper nutrition. The cost of these nutritional supplements is just one necessary expense that will no longer be covered under the new BCMH guidelines.
"Not only is Ohio planning to cut benefits for patients with CF, but many states across the country are considering similar program eliminations. With the fourth largest population of people with CF in the country, Ohio must set a precedent by ensuring that the needs of these patients are met," said Suzanne Pattee, vice president of public policy and patient affairs for the CF Foundation in Bethesda, Md. and an adult with CF. "Now, just as people with CF are finally living longer and new treatments are available, state cuts are undermining access to lifesaving care."
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