Lucky to Be Alive: Riley’s Story
By: Riley Schumacher
When I was an infant, I was diagnosed with common variable immune deficiency.
I spent most of my childhood fighting for my life, spending time in hospital beds, hoping that I would make it to adulthood. My parents spent most of their time fighting for me, either with doctors or health insurance companies that didn’t want to cover me because of my health problems.
My mother took care of me, comforted me, and made sure I was supported. My dad fought for me by advocating and often fighting against health insurance companies to get coverage for experimental treatments. They knew how to navigate the health care system in order to get the care that I needed and keep me alive.
I know that many people with my health problems would not have had access to the same resources. They would not have been able to afford the live-saving care they need.
I am lucky to be alive. But the lives of Minnesotans shouldn’t be dependent on luck.
Because the state of Minnesota values its children, I was put on TEFRA—Medical Assistance (MA) for children with disabilities. When I got older, I was diagnosed with fibromyalgia, asthma, and mental health complications. When I turned 19, I was eligible for general MA. Currently, most of my medical expenses are covered, including doctor visits and medications. Without MA, the cost of my health care would be around $10,000-$15,000 per month, just to cover the medications and services I need to stay healthy. I have no idea how I would afford the care I need through the private insurance market.
Because of the instability of our health care systems, I constantly worry that I might lose my coverage at some point. I ration my medication to make sure I always have some, just in case I get booted off. I shouldn’t have to worry that my medical care will get pulled out from underneath me, but it’s something that me and other Minnesotans are constantly negotiating.
If I didn’t have access to programs like TEFRA and MA, I wouldn’t have made it to Kindergarten and my family would have lost their only son. That is the cost to not investing in health care. That is the cost of putting profits before people.
I am lucky to be alive. But the lives of Minnesotans shouldn’t be dependent on luck.
We need a pathway to accessible, affordable health care for all. That’s what we need for people to live full, joyful lives. When people are healthy, they work and they contribute to their communities. They go to school, have kids, and start fulfilling careers.
When people don’t have health care, they are put into dangerous and costly situations. Not only is that morally wrong, it is bad for our state and our future. I’m an example of what happens when you invest in health care and give people what they need to survive. All Minnesotans, no matter their income or their background, should be able to say the same.
We all have a health care story, because health care is a basic, fundamental need. This is part of a weekly series during Minnesota’s legislative session where we share the health care stories of Minnesotans like you. Share your story here.
