Trevor Sherman: Trapped Between His Job and His Health

For 31-year-old Trevor Sherman in California, health insurance is both a lifeline and a source of fear.

Trevor’s employer-sponsored insurance covers a treatment that costs around $16,000 per infusion and helps keep his autoimmune disease under control. But keeping that coverage means continuing to work, even when the stress and exhaustion of working can make his health worse.

He considered himself a healthy 28-year-old in July 2023. He had been scuba diving since he was 16, and while visiting Hawaii that summer, he went for a dive. He ran through the oxygen in his tank faster than expected and surfaced too quickly, developing decompression sickness, commonly known as the bends. Air bubbles entered his bloodstream and caused multiple strokes.

Trevor survived. But the emergency also revealed another serious threat to his health. During a CT scan for chest pain, doctors found interstitial lung disease. Further testing revealed systemic sclerosis, also known as scleroderma, an autoimmune disease that affects his lungs.

His health care needs quickly became complex and expensive. After an initial treatment caused a major flare-up, Trevor switched his care from Stanford to UCLA. His doctors eventually prescribed rituximab, an immunosuppressant also used to treat cancer. He receives four infusions each year, with each one costing around $16,000. “I can’t afford that on my own,” Trevor said.

Fortunately, Trevor has comprehensive employer-sponsored coverage. He pays about $80 a month in premiums before taxes, with an out-of-pocket maximum of $2,200. His employer also contributes $700 a year to his health savings account, and his insurer has consistently approved the medications his doctors prescribe. “I am aware of how lucky I am to have this insurance,” Trevor said.

But even comprehensive coverage has not solved Trevor’s central problem: He has to keep working to keep it.

His autoimmune disease can flare when he experiences stress. Yet stepping away from work could mean losing the employer-sponsored insurance that covers the medications and specialty care he relies on.

At one point, Trevor struggled to breathe and would nearly pass out simply walking down a hallway. He has taken medical leave from work twice because of the toll his health has taken. But each time, returning to work meant maintaining the insurance he relies on for his treatment. “I have to work because if I don’t have the insurance, I don’t have access to the medications that are keeping me alive,” Trevor said.

Now, Trevor is considering whether he can afford to step away from work to protect his health.

His employer provides a long-term disability benefit that would replace 70% of his pay through age 65. But taking that step would mean losing his employer-sponsored health insurance.

He could potentially apply for Social Security Disability, but there is no guarantee he would be approved. Even if he were, he would face a 24-month waiting period before becoming eligible for Medicare.

His disease is incredibly unpredictable and frequently goes rogue, and he worries about the permanent damage that prolonged stress and exhaustion could do to his body. “I’m terrified of what’s going to happen if I keep allowing myself to have my body get run down and whether that’s going to unleash an avalanche that we can’t control,” Trevor said.

Trevor knows he is fortunate to have generous employer-sponsored coverage. His insurer has consistently approved the medications his doctors prescribe, and his out-of-pocket costs are relatively low compared with the cost of his treatment. But his experience has also shown him how precarious that coverage can be when it depends on his ability to keep working. “That’s fair for someone who doesn’t have health challenges, but not everyone has that ability,” he said.

Trevor believes people should have access to government-funded health care regardless of their age, so they have another option when employer-sponsored coverage is no longer sustainable. “Would the state sponsored health care be as good as the one I’m getting through my employer? Maybe, maybe not, but at least it’s something. It’s a lifeline if I don’t have anything else,” he said. “I could probably speak for everyone, we feel forgotten about and diminished and deprioritized,” Trevor said. “We’re voting, taxpaying constituents. We shouldn’t be suffering more than anyone else in the general population because of something we can’t control.”