Maine Voices: As Congress alters health care law, coverage of cystic fibrosis patients essential

The new year promises change and uncertainty, with health care reform square in the sights of both Democrats and Republicans in Washington. As a parent to a promising 17-year-old who has cystic fibrosis and is soon to be entering college, these are especially troublesome times. Health care solutions for people with rare diseases like cystic fibrosis must never be political – trust me, no one asked to have this dreadful disease.

Over 30,000 children and adults in the U.S. (about 300 in Maine) have cystic fibrosis, a deadly genetic disease. It causes the body to produce thick, sticky mucus that clogs the lungs and leads to respiratory infections and a host of other serious medical problems.

While advancements in cystic fibrosis care continue and hope remains great for new treatments and scientific breakthroughs, the typical cystic fibrosis patient endures a daily treatment regimen that would leave most breathless. It includes two or more hours of chest physical therapy, six to eight breathing nebulizations, each lasting 20 minutes, swallowing a combination of 45 to 50 pills, and much more, including making every effort to naturally live a normal life.

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