In October 2017, our lives changed forever when our boy Vidar was born at Children’s Hospital in Minneapolis. He was born with several heart defects. In spite of successful surgical repair, Vidar developed heart failure and had to be placed on life support. This began a three month stay in the hospital, three months away from our home and our business, and a deeper dive into the American health care system than we could ever have imagined.
As small business owners, my wife and I provide health insurance to our nine full time employees and their families, including ourselves. It is a major expense for us as a small employer, but it was there when we most needed it. Blue Cross Blue Shield has so far paid well over two million dollars for Vidar’s care. We have paid our out of pocket maximum for 2017 and 2018. Our friends and family held a social media campaign to help us raise that $13,400. But insurance has covered the rest.
Vidar is now a happy healthy little guy with the biggest smile you’ve ever seen. He still requires medications, and he’s fed through a stomach tube due to surgical damage to the nerves that control swallowing, but all indications are that he will recover completely and be able to live a normal life. This is the way health care is supposed to work: covering expenses of the most specialized heroic care possible.
But we also experienced the downsides to US medicine. When we came home from the hospital Vidar was on 12 medications, delivered every three hours around the clock. One of the most critical medications was required by the insurance company to be filled by a specialty compounding pharmacy, which would suspend the medication in liquid to be delivered through his stomach tube. Though the insurance company would cover the $5,000 medication, they wouldn’t cover the $5 liquid it had to be suspended in; due to some truly mind-bending rules, neither the pharmacy nor the insurance company could bill us for that $5.
We spent countless hours over the course of 47 days on the phone with the insurance company, the pharmacy, and Vidar’s doctors, but none of them could resolve this catch-22 of uncoordinated systems and regulations. In the end, we resolved the problem by buying an alternative drug out of pocket and compounding it in our own kitchen. Without that, Vidar would have ended up back in the hospital. Our experience exemplifies the downside of the US health care system. It is an adversarial system where the providers and the insurance companies are competing to make money, not collaborating to improve health.
Because of his heart history, the health care system will always be a significant part of Vidar’s life. If we continue on our current course, that part of his life will always be a fight. Health insurance premiums and copays will eat up a huge part of his salary. He’ll be on the phone and at the keyboard trying to get bills covered and prescriptions refilled. He’ll have to be his own advocate, navigating a fractured system that is designed for profit, not for human health.
We owe it to Vidar to work to ensure the protections in the ACA are preserved—especially for those with pre-existing conditions. But we can do better than that. Whether or not you believe health care is a human right, we can all agree that health is a public good. We already spend more than enough as a nation to get a much better system. But it will take us as citizens standing up and saying that health matters more than profit, and demanding Medicare for all.