Stan Clawson: Living with Disability, Fighting for Affordable Health Care

Stan Clawson was born and raised in Salt Lake City, Utah where he runs a small business in filmmaking. “I really love the state, love the city, really enjoy the mountains as much as I can access them.”

In 1996, at age 20, Stan survived a rock-climbing accident that changed his life. “I was rappelling and I fell 49 feet, landed on my back, severed my spinal cord at the thoracic ninth and 10th vertebrae. So, a complete spinal cord injury…That was really the start of not only my disability journey, but also I would say my sort of medical journey and learning to navigate the American health care system.”

He stayed on his parents’ insurance for six years, then moved to his own coverage at 26. Over the years, he held jobs at the University of Utah and a local nonprofit, which allowed him to access employer-provided health insurance. But in 2012, he dedicated himself full time to his small business as a freelance filmmaker. That decision meant relying on the Affordable Care Act marketplace for coverage.

While that coverage is essential for Stan, maintaining his care is a strain on his wallet. “I knew that for me, being a person with a disability who actually uses their health insurance, it would also be fairly costly… but I needed to be insured. I’m not a person who can’t afford to not have health insurance.”

Finding the right plan has never been simple. “Each year plans change. And each year, you have to go back. And each year, you have to figure out which plan is going to be the best. And I typically have to find plans that are maybe slightly more expensive, because I have to plan for the worst.” In recent years, a broker has helped him navigate the marketplace. Still, he said, “It’s not a great system. I would love to have a plan that I didn’t have to re-up every year.”

For Stan, tax credits are what make his coverage affordable. “Right now, I’m paying $334.95 a month for health insurance. And that’s a pretty reasonable plan that gets me what I kind of need. But my monthly tax credits are $382. So they’re actually more than my monthly plan.”

If Congress allows those credits to expire at the end of this year, he said, “I’m actually looking at paying more than 50% of additional costs just for my premium. And we also know that with these health insurance plans, you’re not just paying your premium but you’re also the deductible goes up, the out-of-pocket costs go up. So each year, it’s becoming more and more costly, just in general, to have health insurance.”

Stan worries not only about himself, but for others like him. “We’re taxpaying citizens. We are. We want to contribute. And this just feels like it is an unfair expense, given where we could put funding…what we could do as a nation, like other nations do for their health insurance, right?”

That uncertainty and frustration have begun to affect how he thinks about his future as a small business owner. “What do I do? Do I raise my prices? And what does that do? That could potentially mean that I don’t get business. I can’t pass my expenditures off onto my clients. And so do I take another job?” Stan knows how rare it is to find jobs in production that include health insurance, and staying covered is essential for him to maintain his disability care.

The expenses tied to his disability highlight why affordable coverage is critical. “The biggest cost that I need is urinary. I have to buy catheters. I can’t go to the bathroom without paying money.” This is a challenge that Stan does not think his lawmakers understand or take seriously. “I always said I would love to install a restroom up on Capitol Hill that costs the amount it costs per catheter for our elected officials to use the bathroom each day. I think it is a human right to be able to go to the bathroom. But for somebody like me, I have to pay for it.”

Out-of-pocket, the cost of catheters can reach about $1,440 every month. With insurance, it is still significant. “Some months I have to pay $300 a month for catheters just to go to the bathroom. And that’s just based on whatever plan I have until I meet my deductible. And then it kicks in. So, I think earlier this month it was $300 and now it’s kicked in. So it’s now $62.50. But I’m still paying $62.50 a month on top of my premiums.”

Beyond catheters, Stan covers costs for wheelchair repairs, kidney ultrasounds, and treatment for complications like urinary tract infections. “I am a very healthy person. I’m very active. So I am maintaining, I’m a good patient, but there will always be things that could potentially come up for people like me or myself.”

Stan is pleading with members of Congress to listen to their constituents, “There are going to be people who are going to die. There are going to be people who are going to become a burden to the health care system when they don’t need to be. And I would encourage our elected officials to really make this affordable for us, make health care affordable. We should have health care as a human right.”

He added, “Don’t make the Affordable Care Act a political thing. Let’s just make it better. Let’s create a system that truly is affordable, that works for everybody. And I think that’s a very bipartisan thing. I think it doesn’t matter what side of the aisle you’re on, having your health care needs taken care of in a way that doesn’t break the bank, that really is freedom. That gives you the freedom to be able to navigate in this country and to thrive.”