When our second child, Zade, arrived in 2004, my wife and I thought we knew most of the hazards facing babies. Until the night in the fast food restaurant when Zade died.
At least that’s what it seemed like. I had taken him to the bathroom to change his diaper and he suddenly went limp, didn’t respond to me, and started turning blue. It was maybe 30 seconds, but it felt like an eternity. I can still feel the panic that engulfed me as I ran out of the bathroom screaming, with no idea what was wrong or what to do. An ambulance arrived and whisked my wife and son to the hospital. I followed with our daughter.
As we later learned, our son had experienced a febrile seizure.
These are fairly common: 2 to 5 percent of babies experience them. Most kids eventually stop having seizures and live totally normal lives. That’s exactly what happened to Zade.
The $16,000 ambulance ride, mostly covered by insurance, was followed by a few hours in the emergency department. Over the next few months of his toddlerhood, Zade had a few more seizures. Then they stopped. The terrible part of this story wouldn’t happen for another few years.
In 2009, I switched jobs and needed to buy health insurance for my family. This was before the Affordable Care Act had been passed, and I was required to provide dozens of pages of personal medical questions. Then followed humiliating discussions with a nurse from my new insurance company who asked about every single issue my family had ever experienced. He wanted to know when my birthmarks had started — I’m not kidding — and demanded letters, doctors notes, and intimate details about any time we had ever seen a doctor or taken a medication in our entire lives.
I told the nurse about Zade’s febrile seizures, my family history of high cholesterol, and even my struggles with depression. I knew that disclosing this information could potentially increase our premium, but if that’s what it took to get health insurance for my family, so be it.
Two weeks later, I received my insurance cards and a bill. I first noticed that I was now paying twice as much for our insurance as I had been. Then I noticed that the envelope held only three insurance cards; there wasn’t one for Zade. This insurance company, and five more after that, decided that my son might cost them too much money because of those seizures, which they called a pre-existing condition. So they simply rejected him from coverage.
For the next three years, Zade had no health insurance. I fought and pleaded with every major insurance company, to no avail. I tried to get him into a high-risk policy, but struck out there, too. Passage of the Affordable Care Act finally allowed me to provide my son with health insurance. He’s 13 now, and doesn’t remember this. But as his dad, I spent many sleepless nights terrified about what would happen if the seizures returned or he had an accident or any health issue.
Being unable to provide for and protect your children is one of the worst feelings a parent can endure. Zade’s being rejected for health insurance due to a pre-existing condition was one of the darkest days of my life. In many ways, it led me to start a company, GoodRx, as a way to take back control of my family’s health care decisions.
About 1 in 3 Americans, more than 130 million of us, have pre-existing conditions. It’s surprisingly easy to become part of that group. A friend of mine couldn’t get insurance because he was too tall; apparently tall people are more likely to have health problems. Others have been turned away because they work in high-risk professions, such as being a firefighter or police officer. Some are unable to get health insurance because of family history, regardless of their own current health. When companies can refuse to insure individuals because they have pre-existing conditions, at any moment you could find yourself without health coverage.
Recent moves by the Justice Department, the attorneys general of 11 states, and Congress seem to be paving the way for companies to once again use pre-existing conditions to exclude individuals from getting health insurance. As part of the dismantling of the Affordable Care Act, the individual mandate requiring all Americans to have insurance or face a tax penalty has basically been removed. Now another important part of the act, that health insurance companies can’t refuse to cover you or charge you more just because you have a pre-existing condition, is also on the chopping block.
Depending on how these moves play out, the recent ruling from Texas may include policies that individuals buy through the health insurance exchanges as well as employer-sponsored plans. In simple terms, it could mean that even if you have a full-time job and your employer provides insurance, you might not be able to get coverage.
The Affordable Care Act is far from perfect and, as a nation, we still need to come up with a way to rein in our out-of-control health care costs, which currently consume 26 percent of the U.S. budget and rising. But if our country chooses not to provide health care for all of its citizens, and lets private insurance companies decide who they’ll cover, we’re defying some basic tenets of what it means to be an American — fairness and social security for all.
After the ACA was enacted, my family was no longer interrogated about its health history and my son has been insured. Today, however, I’m worrying again that Zade might be uninsured, and about my friend who bravely survived liver cancer, and about the millions of Americans who battle mental health issues, high cholesterol, a family history of anything, or any condition that is deemed too expensive to cover.
I started GoodRx to help provide Americans with information they could use to find affordable health care. The recent decisions by the Justice Department and others seem to be moving in the opposite direction.
Most other developed nations have figured out how to provide basic levels of public or private health insurance, yet America is considering taking away that option. This can’t end well, and will likely result in increasing costs as more Americans use the emergency department as their doctor and are discouraged from getting preventive care.
Zade and millions of Americans like him deserve better.
Doug Hirsch is the co-founder and co-CEO of GoodRx.