Donald Trump wants to “repeal and replace” the Affordable Care Act (ACA) “quickly.” The United States Congress has already taken steps to make this a reality. If they are successful, my patients will suffer.
I had been practicing as a pediatric cardiologist for a short time when I met Amy. She was a smart and sassy 14-year-old in the throes of adolescent rebellion. She and her mother had been part of the medical infrastructure since the day she was born and wanted to transfer their care to me having recently moved to Chicago.
Amy has a congenital heart disease (CHD) that has already required four surgeries in the first five years of her life, including multiple hospitalizations that has left her with a single functioning bottom chamber in her heart. Had Amy been born four decades ago, she may not be alive. She will need life-long care by physicians who are experts in managing CHD. A heart transplant may be in her future. And, she is part of a growing adult congenital heart disease population.
Due to the tremendous successes in the surgical and medical management of children born with CHD, this is no longer a pediatric disease. Today, 75 percent of infants with the most severe forms and 95 percent of infants with less severe forms of CHD are expected to survive to 18 years of age. In 2010, there were 1.4 million U.S. adults with CHD, up 63 percent from 2000. This population is highly vulnerable and providing adequate care has been challenging due to lack of access and gaps in insurance when they reach adulthood.
The ACA is anticipated to be instrumental in improving access to care and outcomes in my patient population. The ACA is responsible for decreasing the number of uninsured through expansion of Medicaid, the creation of online health insurance marketplaces, the ability of young people to stay on their parents’ coverage through age 26, and the mandate that everyone purchase a health insurance plan. More importantly, the ACA ensures that those with pre-existing health conditions cannot be denied access to health insurance.
In Illinois, where I work as a pediatric cardiologist, 26 percent of the population have a pre-existing condition. In fact, all my patients have a pre-existing condition as they transition into adulthood.
Amy is now 18 years old and will face many medical challenges in her future, the most fundamental of which will be whether she has health insurance. Over the last four years, I have empowered her to take ownership of her health. She has. I have described to her the life-long care she will need including impact on her future reproductive health. She understands. I will help transition her care to a cardiologist who specializes in adult CHD. She is agreeable to this plan. I believe the ACA is key to allow her to maximize her health outcomes. So, I explained to her at our last visit that she should not have a lapse in insurance coverage and have access to care as a direct result of the ACA. She told me she plans to apply for insurance through the online health insurance marketplace next year. I wonder if she will still be able to do this.
In discussing successes in medicine, we tend to focus on the immediate tangible successes such as improvement in surgical technique and acute care in the hospital setting. However, it is the quality of life-long care that my patients receive that ultimately determines their overall health outcomes. To be sure, the ACA is a work in progress but its mission to reach the elusive goal of health care access and equality for all is laudable.
Amy is a true success story in the field of CHD but this success was realized due to critical investment of medical treatments early in her life. She is not “cured” and will need continued access to care as she approaches adulthood.
We in the medical community are committed to providing her life-long care by employing innovative medical treatments and pursuing research to allow for the best outcomes possible. The question remains whether we as a society are willing to help her do the same.
Pseudonym used to protect patient anonymity.
Angira Patel is Assistant Professor of Pediatrics and Medical Education at Northwestern University Feinberg School of Medicine. She is an attending physician in pediatric cardiology at Ann & Robert H. Lurie Children’s Hospital of Chicago.
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