Brick Williams: Self-Employed, Self-Made and Struggling to Stay Insured

Brick Williams grew up in Cedar Hills, Utah where he has built a career as a full-time guitar teacher for the past 24 years. Currently, he teaches “anywhere between 55 and 60 students a week,” adding, “It’s a lot of driving and a lot of lessons. It’s a full-time job.”

When Brick was 19 years old, he was diagnosed with common variable immune deficiency, a genetic disease. “My body doesn’t produce antibodies,” he explained. As a result, he faces difficulty fighting infections. As a child and teenager, he was constantly sick with strange infections and respiratory problems that the doctors could not explain.

After his diagnosis, Brick began receiving infusion treatments derived from plasma donations that give him the antibodies his body cannot produce on its own. “I’m basically getting other people’s antibodies and ability to fight infections injected into my system.” Now he receives two infusions per month that give him “a fighting chance.”

The cost of these infusions is staggering. “For two doses of my medication, the [monthly] bill that I get sent is $12,500,” so, “you’re talking a $150,000 a year.” While insurance covers most of the cost, affordability depends entirely on maintaining continuous coverage.

Running his own business, Brick relies on the Affordable Care Act Marketplace for coverage. “The health care marketplace was so beneficial for someone like me being self-employed, being able to get affordable care.” Before the ACA, Brick received insurance through Utah’s high-risk insurance program, the Health Insurance Pool of Utah (HIP Utah). Though covered, “it was just really expensive. We were paying as much for health care for our family as we were for our rent.” This coverage is even more affordable thanks to enhanced premium tax credits (ePTCs).

The ACA changed his family’s trajectory. “It made a huge difference for my family’s financial circumstances and made health care much more affordable for us. We could actually survive. We were barely hanging on for many, many years before that.” Affordable insurance meant that Brick and his wife could finally save money. After almost two decades of renting basement apartments, they were able to buy a townhouse, and eventually their own modest home. “That was a dream. We tried to buy a home for 19 years.” Talking about this time, he says, “I felt like I was kind of living the American dream to some degree, where I was like, hey, I’m a self-made man. … I started a business, and it was successful enough to put food on the table and a roof over my family’s head.”

Now, with ePTCs set to expire at the end of 2025, Brick faces potential financial catastrophe. “It’s looking like I would have to pay more for health insurance in a month than I pay for my mortgage, and that’s just for me to be insured. Not my family, not my wife and my children. Just me.” The prospect is devastating. “That’s not survivable. Who can survive something like that financially?”

Given the financial consequences of the lack of ePTCs, Brick is forced to consider impossible questions. “Do I need to change my whole career? I’ve been doing this for 24 years. Do I need to go work for the man, work for corporate America, just so I can have health care benefits that are affordable?” The stress of not knowing is overwhelming. “I mean, are we going to be able to stay in our house?”

Brick sees the imperfections in our nation’s health care system. “I’d like to believe if you live in the best country in the world, which I think America in most ways is probably the best country in the world, that you can have affordable health care when you were born with a disease. I did nothing wrong. I was just born with a genetic disease that has plagued my life pretty badly, and to have that be the thing and the fact that I’m self-employed, those two things, be the thing that’s going to be devastating to my family financially — that doesn’t seem right.”

The stress and uncertainty about accessing life-saving medication takes its own toll. “My life depends on these infusions. My chance at living a healthy, normal life and staying on the planet depend on these infusions.”

Brick is advocating for permanent changes that will give him peace of mind and allow him to reasonably afford the medicine he needs to live. He wants to provide for his family and live a healthy life free of medical debt. “To not have the stress of can I get the medicine I need to live this month” would be transformative. “How many years does that put back on a person’s life?”