Repealing the Affordable Care Act would be devastating for young adults with congenital heart disease

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I have been on the faculty as a pediatric cardiologist at the University of Iowa Carver College of Medicine since 1983, after also completing my training at the University under the tutelage of Dr. Ronald M. Lauer. I will be retiring this June after a fulfilling career of watching improvements in our therapies for our patients so that the infant surgical mortality rate has declined from 15 percent to now 3-5 %. We now operate on newborns who previously had no options and died within days to weeks of life. I have had the privilege of following my patients as they grow up and become productive citizens even though they had experienced multiple surgeries in their childhood, frequently requiring lifelong medications and restrictions on physical activities. My patients now include college faculty, physicians, nurses, realtors, teachers, cabinet and window makers. I have also witnessed the development of a new medical specialty: Adults with Congenital Heart Disease because there are now more adults With congenital heart disease than there are children.

Every single one of the patients had a “pre-existing condition” which often meant they had no options after graduation from high school and they were no longer eligible for coverage under their parents’ insurance. Many were denied the opportunities they desired for their futures because of the need to do something which guaranteed them health insurance. Indeed, I would counsel them about choosing careers in which they could work for large organizations which had a greater chance of offering insurance without “questions”. They were often denied the opportunities of working for small businesses because their health care costs were too high, or their pre-existing conditions prevented them from even obtaining any insurance. Given that they had potentially life-threatening conditions, or had devices such as pacemakers, going without health insurance was not an option. Even if they could obtain insurance, there was often a “grace period” which left them without coverage for 6-24 months. I usually had to recommend that they not accept those positions.

All of these concerns disappeared with the Affordable Care Act. My patients could remain on their parents policy, allowing them the time to develop a career which suited their interests and talents. They knew that their heart disease could not be held against them in searching for a job and obtaining health insurance. Unfortunately, since the election, I have started to hear the comments again: I am worried about getting insurance, I can’t get the job I want because I will not have insurance.

I urge to reconsider your position on the Affordable Care Act. It has been a positive development for my patients, many of whom are productive taxpaying citizens of Iowa. Repeal without a simultaneous replacement with similar benefits will be devastating for a large number of my patients.

• Dr. Dianne Atkins is a Professor in the Stead Family Department of Pediatrics at the University of Iowa Carver College of Medicine. Her specialty is Pediatric Cardiology. This column reflects her personal views and not necessarily those of her employer.

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