I’ve met my Representative Peter Roskam face-to-face twice. The last time I saw him, I brought him a photo of our family, my husband and me with our three beautiful girls. I explained how the Affordable Care Act kept my husband alive. I told him that without the ACA, millions of families like mine would be at risk.
Congressman Roskam looked me in the eyes and held the photo for a few moments and said “Thank you.” I remember thinking that he seemed moved, and I thought it would make a difference. It did not. Just five days later, he voted to repeal the ACA.
I never thought I'd have to beg my representative for health care—but we've been through some trials and health care is a life or death matter for us.
My husband and I got engaged in 2007. The day after our engagement my husband went to a softball game. I was home, writing thank you notes to everyone who had congratulated us on our engagement. I was also packing for our first vacation away together the next day.
About twenty minutes into the game, I was told that he had a seizure and fell to the ground. His pleasant summer afternoon with his co-workers had turned into chaos. My husband had never had a seizure before. I rushed rushed to the hospital in a panic to meet him, and were told by the doctors that they had found masses in his brain. We were completely shocked.
After his emergency surgery, we learned that he had stage 4 Glioblastoma, the same brain cancer that Senator John McCain and Beau Biden died from. It is basically a death sentence.
Just one day earlier, my husband was a healthy and athletic 24-year-old structural engineer—now he was battling the most aggressive form of brain cancer. The average prognosis for stage 4 Glioblastoma is 18 months. But he was young and we were determined to fight.
While fighting his cancer, my husband was forced to keep working to maintain his insurance. In 2008, he was almost finished with treatment and was doing remarkably well. His doctors were shocked. When he graduated from chemotherapy, we were told he was amazingly stable. It felt like we could finally start a family.
Almost immediately after we discovered we were pregnant with twin girls, his company went under.
Instead of preparing for our twins, all our savings went to COBRA health insurance. We were paying $2,000 a month and borrowing even more.
In 2009, my husband had an MRI every other month. Each cost about $2,000, and that is not counting the expensive medications and visits with specialists. On top of that, our twins were born and their hospital bill was $30,000. My husband searched for construction jobs in the just-collapsed economy, but had difficulty. Although it's technically illegal to discriminate against disabled people, we know he missed out on a few jobs because of his health.
When the ACA passed in 2010, the sense of relief my husband and I felt was visceral. It meant that we did not have to put every dime into COBRA. We felt like we were escaping the black hole of medical bankruptcy.
Soon after the legislation passed, my husband found a job in Chicago. His employee insurance is fantastic, but without the ACA, the standards for our PPO would plummet. For the first time, his insurance covered his ongoing surgeries and they could no longer subject us to lifetime caps or long waiting periods before our coverage kicked in.
There’s not a lot of employment security for people in construction related fields, and a lot of the work my husband depends on government contracts. It is unpredictable, which is why the ACA is vital for my family. Without it, we would be labeled high risk and charged astronomical prices or even barred from coverage altogether.
Two of my daughters have pre-existing conditions, and my husband is still battling brain cancer a decade after his dire prognosis. The medical device he uses is called Novocure and it is amazing, but without insurance or financial assistance, it would run us $35,000 per month. I don’t know anyone who could afford that.
My family is not alone, and Rep. Peter Roskam knows this. In our district, there are 322,200 Illinoisans with pre-existing conditions. I can tell you firsthand that Congressman Roskam will look you in the eye, feign sympathy, and that’s it. He’s always voted against us when it comes to health care and that is not what we deserve from our Representatives.
Lea Grover is a writer. She lives in Cary with her husband and their three kids.