I Asked My Congressman Not To Take Away My Family's Life-Saving Coverage & He Did Anyway
People forget what it was like before Obamacare, but I remember.
Hospital and doctor’s office waiting rooms were filled with stacks of magazines filled with articles about how to prepare to file for medical bankruptcy or interviews with breast cancer survivors who paid for treatment on credit cards, so that once they were in remission and debt collectors were breathing down their necks, they could file for bankruptcy and start over again.
If you lost your job because you were too sick to work, a new job’s insurance wouldn't necessarily cover you. Even if you somehow scrambled together the money to pay for COBRA, new jobs didn’t actually have to ensure you — not right away, anyway. Before the ACA, you could work at a company for years and still not be eligible for their insurance plans.
Before the ACA, people — including children who had terminal but treatable illnesses — often faced lifetime caps that terminated coverage of their care after only a year or two. According to Georgetown University's Health Policy Institute, pre-ACA, "102 million people in the U.S. [were] in plans with a lifetime limit and about 20,000 people hit them each year," eliminating the possibility of any further insurance coverage of treatment for them.
And if you had any gap in insurance, you might never be insured again, because you had something called a “pre-existing condition.” According to the Henry J. Kaiser Family Foundation, 27 percent of Americans under 65 today have a health condition that likely would have rendered them uninsurable in pre-ACA health insurance policies.
And all this was for people who were insured by their employers. This wasn’t even insurance on the open market — this was the good stuff, the kind of coverage that everyone strived for. It was a nightmare.
The ACA changed that. It removed lifetime limits on most benefits, ended insurance discrimination based on pre-existing conditions, and reduced personal bankruptcies by 50 percent in the U.S. But many people were seemingly too busy debating the individual mandate to notice.
Like my Congressman, Peter Roskam. He’s a conservative Republican, somebody who claims to be “pro-family” and “pro-life;" he was against the ACA from the start.
This matters for a lot of reasons. But it especially matters because I have a husband with terminal brain cancer.
Before the ACA, he had insurance through his employer — an HMO. He was perfectly healthy until one day he had a seizure and was rushed to the hospital in an ambulance. A surgeon told him he needed brain surgery, but because it was a holiday weekend, the surgeon wanted to wait until his best team was available, and sent him home for three days.
His insurance denied the charges for his brain surgery, not only because the hospital was out of network, but because they’d let him leave for a few days. In those few days, brain cancer became a preexisting condition, even though he was still insured.
Because of that, his HMO first denied his emergency treatment as being “out of network” — as though my unconscious husband could tell the EMTs which hospital he was allowed to go to. His insurance then denied the charges for his brain surgery, not only because the hospital was out of network, but because they’d let him leave for a few days. In those few days, brain cancer became a pre-existing condition, even though he was still insured.
I eventually got him coverage for surgery, chemotherapy, and the myriad other treatments he required by convincing his primary care doctor to write a letter accepting complete fault for not diagnosing him sooner. The doctor had thought his brain tumor was a pinched nerve in his leg.
Ten years later, I have one daughter with asthma, and another with a spinal cord defect, both pre-existing conditions. I’m also a mother (a pre-existing condition in and of itself), a survivor of PTSD (another pre-existing condition), and a survivor of sexual assault — horrifically another condition that, before the ACA, could have been used to deny me coverage.
Since November, I’ve managed to speak to Peter Roskam, in person, twice.
He hasn’t made it easy. In fact, he's been so hard to reach that CBS Chicago reported on how many of Roskam's constituents felt that he was avoiding them.
So far, it seems one of the only ways to see him is to be invited to what he calls “round tables.” These are meetings with 10 to 20 constituents, for an hour or two, to address their questions with rapid, broad answers. The dates and times of these meetings often change as well, frequently mere days before they occur, resulting in many constituents getting discouraged, or appearing in the wrong office on the wrong day, at the wrong time.
“You may not think your opinions should matter,” I said, “but they do...Your opinions have the power to determine if we live or die. And we need you to understand that.”
Just a few days ago, I managed to attend my second roundtable with Congressman Roskam. I arrived half an hour early, clutching a beloved portrait of my husband, holding our three children. It was a beautiful picture, set in a beautiful frame.
Only about a dozen constituents managed to keep up with the changing dates and times of the meeting; out of all of them, I spoke last.
As the time ticked by, Peter Roskam spoke about how although America came to a consensus in 2008 about pre-existing conditions being covered by insurance, he disagreed. Then he gestured that it was my turn to speak. I took a breath, and put on my friendliest, suburban-mommy-est smile.
I moved to the empty seat beside my Congressman, and showed him the portrait of my family. One by one, I introduced my little girls, and then their pre-existing conditions. And then, I introduced my husband and his cancer.
Then I pulled out a binder I’ve been keeping for 10 years, which contains every business card for every doctor my husband has seen, a list of every symptom he has suffered, every explanation of benefits and prescription insert. It contains every detail of how much it costs for somebody with a complicated cancer to continue to live.
“You may not think your opinions should matter,” I said, “but they do. You are in the rare and fortunate position of being a member of our federal government, and your opinions are what define our laws. Your opinions have the power to determine if we live or die. And we need you to understand that.”
He said, “That seems like an appropriate note to end on,” and got to his feet. I stood next to him and pressed the portrait into his hands.
“Please,” I begged. “Please take this, and remember my family.”
He looked me in the eye and smiled. “Thank you,” he said, and swept from the room as I gathered my binder of details of surgeries and symptoms and bills. What I wanted to call after him was, “That’s not just a photo in your hands, those are real lives, that’s the lives of my family” but I couldn’t. My hands were fluttering as badly as my heart. As I walked back to my car, I shivered uncontrollably.
Yesterday, my Congressman voted for the AHCA. He had looked me in the eyes and thanked me for a treasured picture of my family. But it feels like his vote essentially said, “Fuck ‘em.”
It feels like a personal affront. I’m astounded at the callousness of the statement he released after the vote, which coolly claimed that the AHCA "responsibly repeals and replaces Obamacare." I felt as if he may as well have spat in my face and laughed.
No, that would have been better to me. At least that would have been honest.
Roskam has already been targeted by the DCCC as a seat to flip. He won in 2016 by a slim margin, against a candidate with a fraction of his funds, in a district Clinton won.
When the news came about the AHCA, I ordered a new print of the portrait, but I don’t think I can put it back up in my house. It’s tainted now; it feels like a tie between me and a man who could look me in the eyes and thank me as he ripped security from my hands.
I know that picture like the back of my hand — the pensive smile on my four year-old’s face, the way my husband’s chin is tilted up to see over her head, the way my seven year-old with asthma is peering around the side of her sister, the pink streak in her twin sister's hair.
I still ordered the new print, though. Poster sized. Ready to plaster to a placard and carry to protests wherever my Congressman goes. Because no matter what he does, I am not done fighting for the smiling, beautiful people in that picture. And I will make sure that he never forgets their faces, either.