With the passage of the American Health Care Act by the U.S. House, the United States is one step closer to a country in which people battling chronic illnesses are denied access to the care they need to survive. The ongoing health care debate in Washington has created uncertainty for families fighting chronic diseases. I am the parent of a 21-year-old son who has cystic fibrosis (CF). These are frightening times.
CF is a deadly genetic disease that affects more than 30,000 people in America (and about 1,000 in North Carolina). CF causes the body to create thick mucus that clogs the lungs and leads to respiratory infections, severe digestive problems, and other serious medical conditions.
A typical day for my son includes two hours of chest therapy to keep his airways clear, frequent breathing treatments, and dozens of pills. He has been hospitalized for lung infections and intestinal obstructions. During his adolescence, he relied on a feeding tube to ensure that he received sufficient nutrition. For my son and others with CF, the cost of care frequently reaches hundreds of thousands of dollars a year.
Our family has been fortunate. Under my employer’s insurance plan, we enjoy coverage that pays most of our medical bills, including my son’s quarterly visits to one of the nation’s finest CF clinics at UNC-Chapel Hill. In addition, we have access to a promising generation of breakthrough drugs that treat the underlying defect in CF. In fact, most patients with chronic diseases currently have unprecedented access to care thanks to the anti-discrimination provisions of Obamacare. Under the law, those with pre-existing conditions cannot be forced to pay more for coverage or forgo proper care.
But the AHCA could change everything. Under the bill passed by the House, states could permit insurers to charge those with pre-existing conditions more for their insurance. States could also impose annual and lifetime caps on benefits paid, thereby exposing sick people to financially crippling medical bills. Once a state opens this door to reduced protections, employer plans would be free to follow.
Finally, the AHCA’s estimated $880 billion cut to Medicaid funding would be devastating for the most vulnerable segment of our population, including the 55 percent of children and 30 percent of adults with CF who currently depend on it.
Many people on both public and private employer plans who are fighting chronic diseases like CF – and more common diseases like cancer, diabetes, and asthma – would have to choose between incurring exorbitant, often bankrupting expenses and forgoing life-extending therapies.
The guaranteed availability and affordability of life-sustaining care for all should be a bipartisan goal. Senators Tillis and Burr and their staffs have expressed to me and other concerned parents a strong desire to protect those with chronic diseases. I urge them to oppose the AHCA.
Peter Barry lives in Charlotte.