T

he much-discussed Affordable Care Act isn’t perfect. It leaves many Americans without health insurance, and it has dramatically expanded the bureaucracy of medicine. Yet parts of it have been invaluable for youths and young adults with potentially crippling chronic conditions.

I work with individuals who have cystic fibrosis. Its signs and symptoms usually begin at birth. For centuries, a child born with cystic fibrosis lived only a few months. Today, many now live into their 50s and 60s, thanks to breakthroughs in medical research, their (and their parents’) hard work, and some frighteningly expensive medications.

The genetic error that causes cystic fibrosis creates an excess of mucus in the lungs and the pancreas. These organs are the first to fail, often at birth. The accumulation of mucus in the lungs makes it hard to breathe, and serious infections such as pneumonia are a constant risk. Without a functioning pancreas, food can’t be broken down and absorbed, leading to malnutrition.

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To prevent these problems, people with cystic fibrosis need to have their airways cleared of mucus several times a day, with each procedure taking up to 45 minutes. They also need to take a handful of pills before they eat to help them digest their food. And like Sisyphus rolling his stone up a hill, the work must happen every single day, as the buildup of mucus never stops.

The passage of the ACA offered very real benefits to many people with cystic fibrosis.

Coverage for a preexisting condition. For parents with health insurance, the ACA meant their child would be covered even when changing jobs.

Coverage on a parent’s policy until age 26. The ACA made it possible for a parent to keep a child on his or her health insurance until the child turned 26. Among my 100 or so patients, 15 have been able to remain on their parent’s health insurance due to this rule change. This may not seem like much, but extrapolated to the 30,000 people with cystic fibrosis in America, that represents about 4,500 additional individuals covered by health insurance. That is likely to be a conservative estimate. I surveyed other cystic fibrosis centers in the Philadelphia-area centers caring for 545 patients — 20 percent were covered under the ACA, a rate slightly higher than in my center.

Protection for participation in clinical trials. The cystic fibrosis community has participated in hundreds of clinical trials over the years. That has been key to the development of many extraordinary new medicines. Before the ACA, an insurance company could deny patients who participated in clinical trials coverage if a side effect occurred during the trial. That was often enough to block individuals from participating in trials. The ACA made this illegal, and my patients are now more eager to participate in trials. One could make the argument that my patients are living longer and better because of this single change.

Some experts who have spoken out against the ACA talk about shifting care toward having people “put more skin in the game,” essentially forcing patients to contribute more money toward their care. With cystic fibrosis medicines costing hundreds of thousands of dollars a year, there’s not enough skin on the body, or money in most individuals’ bank accounts, to cover a single month of medications, or even a month of a single medication.

The Affordable Care Act already asks people to put some skin in the game. My patients utilizing the ACA pay health insurance premiums. Without the ACA, many without insurance would try to get onto some form of Medicaid. That would have a doubly negative effect: under Medicaid, these patients usually pay no health insurance premiums; they would also be forced to work less — or not at all — because Medicaid caps the amount of income a person can make.

A doctor’s job first and foremost should be advocacy for his or her patients and getting them the best care in the world. With all of its flaws, the Affordable Care Act helps us fulfill that mission. It works for a significant number of my cystic fibrosis patients, and it is undoubtedly an important part of helping children with other diseases, like sickle cell and muscular dystrophy, also live longer and better.

It has been said that a society should be judged on how it takes care of its most vulnerable members. Taking care of vulnerable patients with cystic fibrosis means providing them with health care and the insurance needed to pay for it. I hope that our society will be judged favorably on how we treat individuals with cystic fibrosis by safeguarding the provisions of the Affordable Care Act that protect them.

Michael J. Stephen, MD, is director of the Adult Cystic Fibrosis Program and associate professor of medicine at Drexel University College of Medicine in Philadelphia.

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