This is my daughter Rebecca in 2013. She was 5¼ years old when I took this picture. Less than three days later, she almost died on an ER bed.
She’d been completely fine when we set out for vacation that year, and just seemed to come down with a virus or something just after we arrived. She got checked out at an urgent care center, where they diagnosed strep throat. But antibiotics didn’t help. She slowly got more and more sick. We finally took her to be checked out at a nearby hospital, who were just as stumped as we were. They were looking for a room to put her in when she seized and flatlined.
Just like that. She’d been ill, but not severely so. All of sudden, she was on the edge of death. The ER staff barely stabilized her, by intubating her and administering drugs to induce a coma.
There was a large tumor in the center of her brain. Our five-year-old girl, who so far as we knew was completely fine just days before, had aggressive brain cancer.
After a midnight life flight nobody was sure she would survive, she arrived in Philadelphia and had several cranial surgeries, spent more than a week in the pediatric intensive care unit, and then was transferred down a few levels to spend another two weeks on the recovery floor, slowly rebuilding the muscle strength she’d lost from more than a week of immobility.
Later, there were weeks on weeks of radiation and chemotherapy in Philadelphia. After the initial treatment was done, we came home to Cleveland for more chemotherapy.
This is her, hauling her baby brother Joshua up the slide in our backyard, and hauling her mom through the crowd at the local garlic festival. At a CureSearch walk with her siblings and dozens of friends and family. Just barely tolerating my terrible dad jokes, doing her utmost not to encourage me by laughing.
We did everything we could, sometimes through tears and sickening horror, but the treatments didn’t work. Rebecca died at home, surrounded by friends and family one final time, less than ten months after her cancer was discovered, in the early evening hours of June 7th, 2014, her sixth birthday.
In those ten months, the total retail cost of her procedures and treatments was $1,691,627.45. Nearly one point seven million US dollars.
We had health insurance — really good insurance, thanks to COSE’s group plans and my wife’s and my combined incomes. The insurance company’s negotiated rates meant they paid $991,537.29, or about 58% of the retail price.
We paid very little, comparatively speaking, until you counted the monthly premiums. All of it together, co-pays and premiums, was still in the low five figures. Which we were, fortunately, able to pay.
Without insurance, even if we’d been able to get the insurer’s rate, we’d have gone bankrupt. All our investments, our house, everything gone. If pre-existing conditions had prevented us from being covered, or if we’d been less fortunate and unable to afford premiums — bankrupted.
In which case, Rebecca’s brother and sister would have suffered her death, and the loss of their home and what precious little remained normal in their lives.
How many families live through that double hell? How many go completely broke trying to save their child? How many could have saved their children, with coverage that paid for life-saving treatments? How many never had any chance of saving their child, but ran out of money before treatment was complete and now believe their lack of insurance and money was what killed their child?
How many more will have to live with those unthinkable situations, if the House and Senate bills go forward?
The point, the essential point, is this: every family should have the chance to fight as hard as possible for their loved one’s life without going bankrupt in the process. And for those who cannot be saved, no family should be denied the knowledge that they didn’t have a chance. Because knowing that does provide some (small) measure of comfort.
The Affordable Care Act wasn’t perfect, and it was severely and willfully undercut after it launched, but it was a huge step in the right direction. The bill currently before Congress would be an enormous step back. I doubt that I’ll benefit from the tax cuts that are part of the bill, but if I do, I’ll commit every cent I get from them and more to unseat anyone who votes yes on this bill. I have let my senators know this.
I would spare every family the pain we endured, if I could, but nobody has that power. We do, together, have the power to help every family that must endure that pain, to give them access to the simple safety net they need, to concentrate everything they can on the struggle to heal.
I miss her every day, but I know that we did everything that could be done, including being able to afford the hospice care that kept her as comfortable as possible in her final hours, preventing the seizures and pain and fear that would have made her last moments a hell beyond endurance. Allowing her a peaceful end. Every family should have access to that.
Please think about what it means to take that ability away. Please think about what it means to take away the ability to avoid having to make those choices.