March 26, 2010

Cystic Fibrosis Expenses

Cystic Fibrosis (CF), Finances and Healthcare Reform

For many people diagnosed with Cystic Fibrosis as children, state programs for children with special needs have helped provide medical coverage. This coverage ends at age 21. Others may be covered under a parent's medical insurance policy. This coverage usually ends once a patient reaches adulthood and/or is no longer a full-time student. The Health Insurance Portability and Accountability Act (HIPAA) helps people who have group health insurance. However, group insurance can actually refuse to pay for Cystic Fibrosis-related expenses for the first 12 months of insurance. The stipulation is if Cystic Fibrosis is listed as a pre-existing condition. But under HIPAA, you can get credit for the amount of time you had insurance under a previous health insurance plan.

The annual cost of medical care in 1996 averaged $13 300 and ranged from $6200 among patients with mild disease to $43 300 among patients with severe disease. Of total costs, 47% were from hospitalization, 18% were from DNase (Pulmozyme), 12% were from clinic visits, and 10% were from outpatient antibiotics. When the observed costs were used to estimate the costs of medical care for the entire population of Cystic Fibrosis patients in the United States, these costs were estimated to be $314 million per year in 1996 dollars (PEDIATRICS Vol. 103 No. 6 June 1999, p. e72).

Costs have surely increased by large amounts since then. But now with healthcare reform in the works, it’s easy to question how this reform will affect those with Cystic Fibrosis. Will a nationalized healthcare system stop those from getting the care they need? Or will this reform do away with the spotty coverage that chronically ill people experience already? Physicians are already at the mercy of health insurance companies and their disease management programs. Such programs may or may not allow certain tests and treatments if they deem them to be unnecessary. Cystic Fibrosis is difficult enough as is. Private insurers shouldn’t make it harder.