My son at Lucile Packard Children’s Hospital, Stanford
My son is 12. He has large inquisitive eyes, rosy red cheeks, a smattering of freckles across the bridge of his nose, and a contagious, hysterical laugh. He spends his free time making video games, browsing through funny YouTube videos, and consuming large jars of peanut butter. Half-way between boy and man, he still enjoys a good swing on the playset in our backyard and, when he feels well, scaling the sofa in our living room. He’s a great kid.
Three and a half years ago, just after he turned 9, he showed signs of what would become a diagnosis of severe drug-resistant Crohn’s disease. Crohn’s had caused painful bleeding ulcers throughout the lining of his digestive system. For months, we watched him suffer through different treatments only to watch them fail. Our house looked like a pharmacy with pills and injections, rubber gloves, and our very own medical waste disposal unit. Our lives revolved around his pain 24 hours a day.
One warm summer day, I drove my sweet boy, weak from blood loss, heart racing, with a fever hovering around 105, to be admitted into Lucile Packard Children’s Hospital. He whispered from the backseat of the car “Mom, do I need a will?” He had just turned 11.
“I've learned a few things about the insurance industry and a lot about health care over these past few years.”
After five weeks in the hospital, we finally discovered a series of unconventional treatments that helped ease his symptoms. Luckily, our incredible team at Stanford and the treatments that saved him were covered by insurance through my employer. And, although I’m thankful for that insurance, I also know I would have had to fight for these same treatments had this not been an emergency. You see, I’ve learned a few things about the insurance industry and a lot about health care over these past few years. Here is my conclusion: it is absolutely insane that we allow for-profit insurance companies to manage access to our health care.
Good health care can be costly and insurance is a for-profit business responsible only to shareholders. My son and people like him dramatically reduce company profits. Without a legal requirement, there is no incentive for a company to insure him or give him access to the expensive treatments he needs. Did you know that insurance companies have their own doctors and nurses on staff to fight your medical team and deny expensive treatments and hospitalizations? I didn’t. So not only must your doctor be caring, a good listener, and versed on the latest research in her field, she also needs to be a fighter, willing to spend the time arguing for the necessity of what she has prescribed.
Compounding the problem is that pharmaceutical companies overcharge insurance companies when they know insurance will pay. After all, pharmaceutical companies also need to turn a profit. My son currently receives Entyvio intravenously every 4-7 weeks. Each dose is billed at $35,000. That’s $420,000 a year for nothing but a single medication. Suspiciously, Entyvio, Remicade, and other expensive drugs known as “biologics” offer steep discounts for customers who don’t have adequate insurance.
The Affordable Care Act (a.k.a. Obamacare) isn’t perfect. It relies on insurance and pharmaceutical companies being magnanimous and keeping costs low ― against their best interests. But doing away with the ACA punishes people like my son who need continuous access to health care. He needs to be able to stay on my insurance until he is 26 and, once he is out of college and in his first job, he needs to have access to insurance regardless of his pre-existing condition. Without it being a requirement, no one will insure him. Without good health care he will die.
In the past couple of months my boy has grown taller than me. His voice is scratchy and low. He isn’t in constant pain and continues life within reach of what is “normal” for a pre-teen boy. He knows about the Affordable Care Act but I haven’t brought to his attention just how much is at stake with its removal. I’m giving it some time, hoping that Americans will do the right thing for this kid, my kid, and all those like him.
