Ethan’s parents couldn’t be more enthusiastic about their son’s operation. “Until they see his scar, no one even knows he was born with a heart problem and had open heart surgery,” they tell me. “He runs around just like his friends and is the fastest skater on his hockey team.”
As his pediatric cardiologist, I smile as Ethan’s parents proudly tell me how well their son is doing. I helped their family get to this point, but so did their having access to quality health care since the day Ethan was born through All Kids, an Illinois program that provides comprehensive health care regardless of health condition or the ability of a family to afford it.
Since President Trump’s election, multiple attempts have been made to dismantle the Affordable Care Act and, consequently, funding for programs such as All Kids. Despite setbacks, some of our leaders in Congress continue to push for repeal without having an acceptable alternative. This latest version is called the Graham-Cassidy bill.
I can’t help but wonder why the same health care conversation repeats itself without any progress. No one appears to be listening to each other and the future of our health care system remains in crisis with no solution in sight.
Jimmy Kimmel, comedian and father to an infant son named Billy who was born with congenital heart disease, blasted this new attempt to repeal the ACA. “I don’t know what happened to Bill Cassidy,” Kimmel said on his late-night show. “He said he wants coverage for all, no discrimination based on preexisting conditions, lower premiums for middle-class families, and no lifetime caps. Guess what? The new bill does none of those things.” To get out front of his critics, Kimmel added, “By the way, before you post a nasty Facebook message saying I’m politicizing my son’s health problems, I want you to know: I am politicizing my son’s health problems.”
As a physician whose job it is to provide lifelong care for babies like Kimmel’s son, I agree with him — it is time for all of us to politicize our children’s health problem. But, it is also time to listen to each other.
The American Academy of Pediatrics warns that the bill “may be disguised under a different name, but it contains the same dangerous policies as the legislation that failed to advance out of the Senate earlier this summer. In fact, Graham-Cassidy goes even further in its attacks on Medicaid.”
Sixteen patient and provider groups released a joint statement opposing the Graham-Cassidy bill, saying it would “limit funding for the Medicaid program, roll back important essential health benefit protections, and potentially open the door to annual and lifetime caps on coverage, endangering access to critical care for millions of Americans. Our organizations urge senators to oppose this legislation.”
The New England Journal of Medicine called it the “the most harmful ACA-repeal bill ever”.
What would the Graham-Cassidy plan hold for an infant born with a condition similar to the one that Kimmel’s son has? By limiting funding for Medicaid, he may not have access to lifesaving surgery in the first place. Placing lifetime caps could limit his future ability to access care for his chronic condition. Given the limitations of preexisting conditions, it is possible that no child with congenital heart disease would have access to affordable health care as insurance companies would be allowed to discriminate and charge an unaffordable amount for health care coverage.
Kimmel admits he has independent means to obtain health care for his son and argues, “Your child with a preexisting condition will get the care he needs — if, and only if, his father is Jimmy Kimmel. Otherwise, you might be screwed.”
Children with congenital heart disease and other conditions that appear before or soon after birth deserve immediate lifesaving surgery and access to lifelong care in order to live as healthy lives as possible. Every day I see the positive impact of continuous access to quality care for my patients. Surgical improvement and consistent care across their lifespan allows the children I take care of to live long, productive lives that to would not have been possible even 40 years ago.
This issue isn’t only about Kimmel’s son or children with heart problems. This affects all children who receive care through the ACA or programs funded from it. This includes yearly well-child visits, preventive care, emergency room visits, surgeries, and care for chronic conditions such as pediatric cancer or congenital heart disease.
In a country as prosperous as the U.S., whether a child will have access to quality health care should not be dependent on how much money her or his parents make. We must advocate for a safety net for all children.
To be sure, the ACA is not a perfect system and fix it is not an easy endeavor. But the first step needed to arrive at a reasonable alternative must be to create a space where both sides begin to talk to each other. In our current political environment, that is not happening.
So Kimmel, Ethan’s parents, and others who have benefited from the ACA, along with physicians who care for vulnerable children, need to respond with political activism and call on our representatives to reject the Graham-Cassidy plan. We must also demand that our politicians truly listen, engage in discussions, and then compromise so that we can arrive at a system that works for all individuals in the U.S., regardless of financial status.
Angira Patel, M.D., is assistant professor of pediatrics and medical education and a member of the Center for Bioethics and Medical Humanities, both at Northwestern University Feinberg School of Medicine, and an attending physician in pediatric cardiology at Ann & Robert H. Lurie Children’s Hospital of Chicago.