As a mother of four children who each live with a chronic disease, I’ve learned a thing or two about our health care system.
Since our children were born, our family has lived in and out of doctors’ offices and hospitals throughout the country, enduring x-rays, needles, diagnoses and treatment discussions. We’ve spent countless hours on the phone with insurance companies, navigating the opaque world of claims and medical records. People tell me they don’t know how I do it, but as any parent of a child living with a chronic disease can attest, this is just our reality. It’s never been any different.
That said, in the years since we began our journey, the treatment landscape has changed dramatically. The medical community, led by the biopharmaceutical industry, has greatly improved our understanding of both the genetics and underlying causes of disease, including autoimmune conditions like the ones affecting my children. That has led to new medicines that are helping improve the lives of families like ours.
So when people ask me how I do it, my answer is “medicine.” Medicine is our survival. Our life revolves around medicines, and we can’t function as a family without them.
Unfortunately, under the current health care system, access to these medicines can be incredibly challenging. Even if a doctor prescribes a treatment, an insurance company can step in and deny it. When we need insurance the most, they fight us every step of the way.
It’s beyond frustrating. Doctors and parents should be the ones to help guide the treatment for our children, not insurance companies. But more importantly, by denying my children the medicines they need, these companies are choosing to take away effective solutions. It means I have to tell my children, “We know this medicine will help make you better, but the insurance company won’t pay for it.”
This is not how a health care system should work. I shouldn’t have to endlessly fight with insurance companies about how to care for my family. I invite anyone to walk a day in my shoes and then tell me I shouldn’t have the medicines that will make my children better. That includes members of Congress, who have proposed legislation claiming to save the government money but could result in more than 50 fewer innovative medicines over 10 years. As someone living in Montana, I don’t really care how much the government saves; I want to know how much I’m going to save right now. And as a person who depends on innovation to help my children, I certainly don’t want these government savings to come at the cost of new treatments.
My story, which is not unique, shows that our health care system is broken. We have to find a way to evolve in a direction that balances costs and protects access to medicines without sacrificing our potential for innovation in the future. The kind that could help my kids. But more importantly, we have to move in a direction that puts patients first. When you’re living with a chronic disease, every day is a battle on its own. The last thing I need is a system that works against my family, rather than for it.
Amy Hasselbach is a mother of four children with connective tissue and autoimmune diseases. As part of Voters for Cures, she joins her husband, Brian, and other patients across the country to stand up for innovation and patient affordability. Click here to tell lawmakers to protect innovation when addressing health care costs.
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