The ACA helped us afford our daughter’s brain surgery. We need to build on its legacy.

It was a humid night in India when my 11-year-old daughter Merlin lost the ability to use her right arm. She was happily playing with friends at a class party when her fingertips started to grow numb. Within minutes, her entire arm was tingling and limp. We returned to our home concerned, but within the next fifteen minutes, the problem was gone. 

My wife and I had moved to India a few months earlier to show our kids another part of the world. It was 2010 and we had secured jobs at a local boarding school. Soon after moving, Merlin began having random problems with her right arm. Otherwise, her health seemed perfect; we thought that it was maybe stress from living at a high altitude in the foothills of the Himalayas. 

Yet the problems continued after we moved back to the U.S., so we took Merlin to see her pediatrician. The pediatrician couldn’t find anything wrong but recommended an MRI. 

When we came in for the results, the doctor looked grim. He told us that, in the upper left quadrant of her brain, Merlin had an upper arteriovenous malformation (AVM) — a tangle of blood vessels that prevents veins and arteries from connecting properly. It turned out that Merlin’s arm problems were small seizures caused by the malformation. 

An AVM disrupts blood flow and is at risk of bursting at any time. Every year of life increases the chance of rupture by about 2%. My daughter was told, “You’re likely going to have a hemorrhage at some point in your young life.”

My wife had just been accepted to a PhD program at the University of Michigan, and we were worried that we could not move or change jobs ever again because of our daughter’s illness. Thankfully, the Affordable Care Act had passed just a few years prior, making it impossible for insurance companies to refuse coverage to Merlin due to her preexisting condition. So once my wife started her new position at the university, we were able to get Merlin insurance through her job. 

Soon afterward, Merlin received a cutting-edge procedure we could never have afforded without insurance. She was treated with Gamma Knife surgery, which involves hundreds of precise radiation beams that can pass through the skull and brain and cut only where the beams meet. With this procedure, surgeons were able to cauterize the areas around the AVM — not preventing, but greatly diminishing the possibility of a hemorrhage. 

Merlin is 23 now and lives independently with the assistance of anti-seizure medications. She has thankfully not had ruptures in her AVM, though she has had several expensive emergency room visits in the past decade due to grand mal seizures. 

Our family would not have been able to afford any of this without the ACA. By ensuring that people with preexisting conditions can get coverage, the ACA has allowed us to keep Merlin on our insurance, get her potentially life-saving surgeries, and afford medications that would otherwise be cost-prohibitive. 

Now, President Biden is working to build on the signature legislation, which recently marked its 12th anniversary. But other leaders like my own, Senator Ron Johnson, instead want to roll back rights. Sen. Johnson recently urged Republicans to repeal the ACA if they retake the White House and Congress in 2024. 

Instead of repealing the ACA and throwing millions off their insurance, we should expand healthcare access, as President Biden has proposed. Biden’s plan would provide subsidies to families whose employer-provided insurance costs more than 10% of the family’s income. This would expand healthcare coverage to around 200,000 people, including many uninsured children. 

In a few years, Merlin will turn 26 and have to get her own insurance. Like most parents, we worry about her coverage. I especially worry what it could look like in the future our Senator wants to create. But we are thankful that she has been able to stay on our family plan and that, for the time being, she will not be turned away due to her health. Going forward, I urge our lawmakers to continue working to expand access to healthcare so that no one has to go without coverage.