Heidi Pomerleau: The Constant Fear of Losing Medicaid and Medicare Coverage

Heidi Pomerleau has lived in Salt Lake City for twenty years and proudly calls it home. Permanently disabled, Heidi is currently well covered by both Medicaid and Medicare; however, finally getting this coverage required years of navigating systemic barriers to coverage. After decades of navigating the health care system, Heidi has experienced the consequences of tying health insurance to employment and is concerned about Medicaid work requirements. They are currently using their expertise to advocate for more accessible and just coverage for their community.

The combination of being covered by both Medicaid and Medicare is essential to their health. Because Heidi is permanently disabled, they are exempt from the proposed work requirements, and the combined coverage enables them to receive largely consistent care. “I’m very happy with my health care overall,” they said. Still, they know their Medicare coverage has limits. “[Their health insurer] will do things like all of a sudden deny an infusion that they once covered two months ago in the same calendar year.”

Despite those denials, Heidi has been able to access the care they need because of the additional Medicaid coverage. “If I had to pay the cost of Medicare [without Medicaid], I would be paying $180 a month just for the premium and then I would be responsible for at least 35% of my health care,” they said. Their primary care doctor told them that losing Medicaid would easily cost them over $500 more in expenses a month. “That’s out of a fixed income,” Heidi said. “It’s something that I rely on because I have 10,000 specialists. I am a complex disease patient.”

Heidi described their process of qualifying for disability Medicaid as lengthy, complex, and traumatic. “The state requires you to either be in an active application for disability or that you have been awarded SSI or SSDI. Without those two things you will not qualify,” they said. Heidi went through three separate applications, five appeals, and a court hearing that took over two years. “During that period of time you can’t earn money. To even apply for disability, you have to make a plan for your safety, your security, your housing, your food.” Heidi said that when you apply for disability benefits, you can receive a small amount of benefits, but the limited benefits are temporary. “If your case is not resolved within 12 months those [benefits] go away,” they said. “You may still be waiting, but the state has moved on. It’s not livable. It’s not humane.”

Before the Affordable Care Act (ACA) and before qualifying for disability Medicaid, Heidi’s employment was central to their ability to access health care. They said, “I used to work jobs specifically for the health insurance.” Heidi worked through pain, often in jobs their body could not handle. “My body wasn’t capable of working in a warehouse, but I had to anyway.” When Heidi could no longer work, they lost their health insurance altogether. At that time, “COBRA would have been too expensive and there were no real plans for people who had pre-existing conditions,” they said. They joined Utah’s high-risk and “prohibitively expensive” insurance plan in 200, but shared, “It wasn’t until the passage of the ACA that I was a little more sure of my situation.” Before that, they faced frightening choices. “I specifically remember declining an ambulance after a head injury mountain biking,” they said. Other times, they could not fill their prescriptions: “Until you’ve experienced it, you don’t know what it is like to ration your medication.”

The need to work and coverage instability took a toll. “It was really scary because I knew that I didn’t have the ability to see the doctors I needed to and my body was paying the price,” they said. This work to maintain coverage has had long term consequences. Heidi became unhoused for a period and said, “If I wasn’t disabled before, [that time] pushed it over the edge.”

Heidi says losing health care worsened their health and caused lasting trauma. “My experience with losing health care contributed about a third to chronic PTSD. I live in constant terror of my benefits being taken away. I live in chronic terror of not being able to go to the doctor, of not being able to get my meds.” They add, “When you’ve had [your coverage] ripped from you so many times and you hear people on TV demonizing you because you’re poor or disabled, it does not create any sense of confidence or security. There is no safety in that.”

They worry about what would happen if they lost benefits. “If I were to lose access to these benefits, I would need to seek asylum in another country because there would be no way for me to survive,” they said. “I would become homeless and because I was homeless, I would become a criminal and then I would probably die to be honest.”

They see the cuts to Medicaid as catastrophic. “What’s being taken away right now from disabled people, from poor people, from children is going to have lasting impacts on people’s health, it’s going to have lasting impacts on people’s mental health, and it’s going to kill people,” they said.

Heidi continues to try to help others navigate the system and to advocate for improvements. “I do my best to get everyone around me health care that they can use whether that’s an ACA plan or Medicaid,” they said. They advocate for others, often accompanying people to the emergency department and helping community members get insured. “If I can help people suffer less I want to do that.”

Their activism goes back decades. From leading a picket line outside their social studies class in the seventh grade to marching to protect the ACA as an adult, Heidi continues to fight and share their perspective. “I remember talking to people who were so against [the ACA], and I said do you know what freedom means to me? Freedom to me is when I can have health care so that I can be free to pursue all of the other activities in life.”

Central to Heidi’s advocacy is the rejection of the idea that poverty or disability reflects a personal failure. “It’s not a moral failing to be poor or to be disabled,” they said. “My value does not come from my productivity and my worth to the job market. I deserve the care to exist.”

Heidi’s closing message is simple. “A healthy society is a happy and productive society and right now we are all struggling.”

For Heidi, “freedom comes from health care.”