My Family’s Struggles Were at the Heart of the 1994 Health Care Fight

Dismantling the Affordable Care Act now could kill us.

Protesters rally against the GOP health care plan on July 26, 2017.
Protesters rally against the GOP health care plan on July 26, 2017.
Drew Angerer/Getty Images

During my first trip to the White House, I sat in the front row of chairs set up under a tent on the south lawn. My old car had struggled to make the four-hour drive from Pennsylvania coal country to Washington, D.C. It was spring of 1994, and then-President Bill Clinton was trying to garner support for his health care reform plan. Hillary Clinton, the first lady, led the task force trying to get the package passed.

The group had been working for more than a year but faced strong opposition from all sides, as critics complained the plan was too complicated. In an attempt to drum up support, the White House had put together this event—held a few days before Mother’s Day, with a “mothers” theme—to let politicians and health care officials hear firsthand accounts of people who struggled with health care costs and access.

In other words, it was one of those events where political leaders trot out poor people to give a “face” to their cause, so disconnected policymakers can see the real individuals impacted by their decisions. Coming from working-class Luzerne County, I was one of those people.

My family has a long, grueling history of struggles with health insurance, and challenges caused by the lack of it. This was already true back in 1994, when I had three children under 5 years old. An insurance company refused to cover most costs associated with my first pregnancy because they considered it a pre-existing condition. Our son was born with several serious medical issues, which then made it impossible for us to get new coverage when we lost our insurance. Our second son arrived a year later, also with health issues. At this point, we were considered toxic to insurance companies, who gladly exercised their then-lawful right to deny us coverage.

Our oldest son needed nearly a half-dozen surgeries and other major procedures by the time he turned 2. Lack of insurance made this process nearly impossible. We were turned away by numerous doctors. We once literally begged a surgeon’s office to help, but they refused to even schedule the consultation until we could come up with at least 50 percent of the surgery’s cost as a down payment. Another time, we had to take out a loan to pay for a different surgery.

By the time our third son arrived, our mail consisted of an endless barrage of medical bills we couldn’t afford to pay. I’d had three high-risk pregnancies with complications, and we now had three children with health issues. I took a job in a paper bag factory just to get insurance coverage, but the insurer seemed to take glee in issuing denials for any medical expenses they could remotely classify as related to pre-existing conditions.

It was around that time that I had launched a letter-writing campaign, sharing my stories with my representatives at every level of government, along with any other health care or insurance groups I could find. Somehow, one of my letters made its way to an organization tied to the health care task force.

That’s how I found myself sitting in the front row on the south lawn, as Hillary Clinton gave a speech in which she mentioned my name and briefly summed up my story. I had to take an unpaid day off from the paper bag factory to make the trip.

Sadly, this push for support wasn’t enough, and the health care reform plan was scrapped later that year. My family’s struggle to afford health care access continued for nearly two more decades. We finally got some relief in 2010 with the passage of the Affordable Care Act, which at long last allowed us to get health coverage without insurance companies using health issues against us.

But now, thanks to a decision released last month by a Texas district court judge, I’m terrified that we’ll be propelled right back to the same scary, helpless place we were nearly 25 years ago when I made that trek to Washington, D.C.

Democratic lawmakers have already announced plans to appeal Judge Reed O’Connor’s ruling that the Affordable Care Act is unconstitutional, and the Fort Worth judge has agreed to stay his own ruling pending appeal, a reprieve that will keep the law intact for now. But if the ruling is upheld, the future for millions of Americans like me who depend on ACA protections to obtain treatment could be bleak.

I have two sisters who went without medical care for years prior to the ACA because they had inadequate insurance or no insurance at all. One now needs a double lung transplant, and the other has advanced multiple sclerosis that has left her blind in one eye and barely able to walk. I try not to contemplate how different their lives might be now if they had been able to receive medical treatment years ago.

For them and others in my family, the arrival of the ACA was a literal lifesaver. The care I receive for my own serious medical conditions and health emergencies—including a stroke I suffered without warning last year—is all that stands between a relatively normal, productive life and significant disability or possible death.

To take away our means of survival, as this ruling seeks to do, would be cruel and shameful.

Republican leaders have had eight years to come up with improvements to the Affordable Care Act. They complained about the law nonstop that entire time, but have yet to put forth any feasible alternative plans. Throughout that time, bright minds with advanced health care policy knowledge from nonpartisan organizations have explored ideas for a revamped health care system—concepts that could have served as a strong jumping-off point for those ostensibly looking to repeal and replace Obamacare. The GOP failed to pursue any of these leads.

The abolishment of the ACA now wouldn’t just send us back to where we began. It would create way more headaches than we had in the first place. (This is perhaps one reason why Judge O’Connor stayed his own ruling.) Hospitals, insurance companies, and other entities involved in medical treatment or health care payments have completely restructured their entire systems based on the ACA. Eliminating the law completely without any alternative plan ready to go would be devasting—and deadly—to a huge number of Americans. This move would leave carnage in its wake.

Not surprisingly, Donald Trump shared his reaction to the Texas court decision via Twitter shortly after the ruling, cheering the development as “Great news for America!”

It’s sad and disturbing that Trump and so many GOP leaders would celebrate a move that could leave millions of sick and vulnerable Americans with no access to critical medical care.

I am terrified at the prospect of returning to the pre-ACA days, when many members of my family suffered in pain without medical treatment. For people like me and my loved ones, a return to that time could essentially be a death sentence. It will ultimately be up to Chief Justice John Roberts and the Supreme Court to do the right thing and prevent this outcome. Otherwise, I fear we will be propelled backward to a scenario where once again access to health care becomes a luxury out of reach to many who desperately need it.