Obamacare Is Life Or Death For My Family

This year, our insurance premiums went up again.

We know it’s because of Obamacare, the Affordable Care Act. Like a lot of Americans, we live in a state where our governor refused federal funds to fully fund Obamacare, which means the bill gets passed down to people like us. There’s a mandate, which means whether or not you think you can afford it, you’ve got to pay for insurance, and I can see how some people are angry about it. I don’t particularly like that for all of this year, we’re losing another $200 a month to an insurance plan that hasn’t changed at all from last year’s.

Only, I understand how good a deal our insurance still is, thanks to Obamacare. I understand how important it is to have insurance at all.

When my then-boyfriend and I started getting serious 11 years ago, he got a new job. It was one of those life-defining moments, when whether you know it or not you establish the role you will play for the rest of your life. He asked me whether I thought he should get the PPO or the HMO, and I told him to get the PPO.

“But I’m healthy,” he said. “I exercise, I’m never sick, and the HMO is cheaper.”

“Yeah,” I said, “But you could get sick. You never know, right? And you don’t want to be in a really crappy situation if you do.”

What I wanted to say was, “Don’t be stupid! This is important.”

He decided having extra money to spend on dates with me was more important than fancy insurance.

That summer, he proposed, and the next day he had a grand mal seizure as he played second base at a softball game. When they rushed him to the hospital, they discovered brain tumors — inoperable, grade IV glioblastoma. That’s of the most deadly cancers, killing the majority of patients in less than a year. The average life expectancy was 18 months.

You can bet his HMO didn’t want to pay for coverage.

I spent most of the next year fighting $100,000 bills for surgery, thousands of dollars a month for MRIs and chemotherapy, tens of thousands of dollars for radiation, not to mention simple doctor’s visits. We were ridiculously lucky — because I had nagged my future-husband so much, he’d asked his HMO’s doctor about a symptom that turned out to be brain cancer, and the doctor missed it. Because of that mistake, I was able to get my husband coverage, and that was good. Because if his coverage ever lapsed, for any reason, he could never get insurance again.

That was before Obamacare, before the pre-existing conditions clause. It meant that if the love of my life survived, he could never get coverage for anything as common as an ear infection.

On the day President Obama signed the Affordable Care Act into law, my husband had been living with brain cancer for three years. In that time, the economy had collapsed causing my husband to lose his job, and we went deep into debt to pay for COBRA, because living with cancer isn’t simple. He needed MRIs every other month, at about $2,500 a pop. He needed anti-seizure medications that, before insurance, topped $1,000 a month. Plus, by the time Obamacare came into our lives, we had twins, and an emergency C-section for the birth of preemie twins is not cheap. But we were willing to leverage our financial future on keeping ourselves alive. My husband got a job, but had to work there a full calendar year — January 1 to December 31 — before insurance kicked in. Even though he had a job, we were relying on COBRA because, if he let his insurance lapse, that was it. He was dead.

When the ACA came around everything changed for us. Not only did it mean he could have insurance gaps, that if he ever lost coverage he could get it again, it meant that employers like his couldn’t get away with denying benefits to their employees. My husband worked for that company 14 months before becoming eligible for their insurance. Thanks to Obamacare, nobody else in this country has to experience that limbo.

I’ve watched the public outcry over the Affordable Care Act, repeating the conversation I had so long ago with my husband over and over again.

“But you could get sick, and you don’t want to be in a really crappy situation if you do.”

You could get hit by a bus, have a lung punctured, and then — BOOM! — pre-existing condition. No insurance for you, ever.

You could have asthma. BOOM. No insurance for you, ever.

You could have autism. BOOM. No insurance for you, ever.

And yes, it can be expensive. Of course it’s expensive. Nothing new is ever cheap, and a health care mandate is new. But the things you pay for with your health care plan aren’t just your health care plan. What you pay for is the right to be charged an equal amount for a plan, whether you’re male or female. What you pay for is the promise that you will not face lifetime caps for coverage. What you pay for is the promise that if you ever get sick, you will not lose your coverage.

I remember sitting in the waiting room while my then-fiancé had radiation treatments, reading articles about how “medical bankruptcy” was the most common reason people lost their financial stability. The most common.

We were lucky. We didn’t lose everything. We maintained insurance coverage. We muddled through.

We are still unfathomably lucky. My husband is alive. Since his diagnosis, he has become a father to three wonderful girls. Girls who I try not to worry are genetically predisposed to their father’s cancer. Children who, if they are so unlucky as to get from their father’s genes what happens to be one of the most common pediatric cancers, will also have pre-existing conditions their entire lives.

We are lucky to live in a future where radiation and surgery and chemotherapy aren’t the only options to treat brain cancer. These days my husband wears a device called Optune on his head. It shoots beams of electricity through his brain that tear apart tumor cells, and has no side effects. With our insurance, once we meet our annual deductible we pay nothing. Without our insurance, this machine that keeps my husband alive could cost us as much as $35,000 each month.

When I catch myself grumbling about another $200 in insurance each month, this is what I think about. I could be paying $200 more a month, or I could be paying $35,000 more a month. Maybe my husband’s co-workers grumble about their health care costs rising too. But then I imagine they look at him, see the device on his head, and know that what they’re paying for is three children who get tucked into bed by their father every night, who have had the privilege of getting to know their dad, who would be worse than heartbroken if his coverage disappeared, and he disappeared with it.

Everybody in this country knows somebody who is only alive because of Obamacare.

The Affordable Care Act is clearly not perfect, but without it my husband would be dead. My family would be destitute. We are far from outliers, more than 50 million Americans live with pre-existing conditions, and our insurance is everything. It is our security, safety, peace of mind, and the promise that the sun is going to rise in the morning.

To the senators who voted to take away everything about the Affordable Care Act that saves lives, I say what I wanted to say 11 years ago.

“Don’t be stupid! This is important.”

This is life or death. This is choosing who is worthy to watch their children grow up, and who is not, based on the bad luck of fate or happenstance.

Repealing the ACA is a death sentence for people, amazing people like my husband, whose only crime is that they had the audacity to become sick, and find a way to live.