We're In This Together

  • May 1, 2017

Navigating the Health Insurance Marketplace

By DRT Board Member, Lacey Lyons

When I was an undergraduate in college and studying journalism, my mentor gave me a piece of advice. She told me that if I wanted to learn about a topic, the best way would be to get a job editing about that topic. You’ll read everything there is to know, she said.

This notion became directly relevant to my life in 2008, when I aged out of my parents’ health insurance coverage. I have cerebral palsy and epilepsy. Going without insurance was not an option. I had to learn about health insurance, and quickly. I was entering graduate school during the proposal of the Affordable Care Act (ACA). Needing a source of income, I took a part-time editing job at a company that researches managed-care trends. I felt like a spy. Anyone who has shopped for individual health insurance knows that it is hard to find and hard to afford, yet here I was, a person with a disability learning terms at work that were directly related to my health. “Pre-existing condition.” “High-risk pool.” “Copay.”

I often reacted to the debate about the potential scope of the ACA in visceral ways. My coworkers were lovely and supportive, which was a gift during this time. They made corny insurance industry jokes at meetings, and we ate lunch together, talked about books, and took walks each afternoon when the weather was nice and our brains were fried. They taught me a lesson that is sometimes lacking in our discourse—that building rapport is as important as hammering out policy specifics. I didn’t see this on TV, where CNN was always on mute at work. The insurance industry would classify me as a “young invincible” based on my age and otherwise good health, and yet, every time I had to pick up a prescription, my stomach was in knots because I was geared up for a fight. In my driver’s license photo from that time, my eyes are red and puffy. I had just finished bawling before getting my photo taken, anticipating the next month’s copayments and premiums, which I wasn’t sure if I could afford. “This shouldn’t be,” I thought. “I’m working as hard as I can. I’m in school getting my masters’ degree. I have a healthy family support system. What about the people who don’t have backup?”

I’d been told that I could do anything, that there were no limits on what I could achieve, and that my disability didn’t make a difference. It was disconcerting to reconcile that idea with the fact that the health care system saw the medication I need to stay seizure-free as too much of a burden to shoulder. By extension, so was I. The onus was now on me to find, and pay for, individual health insurance. I am lucky it was an expense I could ultimately afford. I met with a broker for UnitedHealthcare and bought an individual plan. Once the ACA passed and I graduated from my masters’ program, I began working at another job in my field. Since I don't have insurance through my employer, I bought a Blue Cross Blue Shield plan through the ACA marketplace with help from another broker. I took advantage of the subsidy for which I qualified. My costs plummeted so much that I felt as if I’d gotten a pay raise. When Blue Cross exited the ACA this year, I forewent the subsidy, even though I qualified based on my income. I was too hesitant to gamble with my health on the maintenance of political and industrywide norms. I still wonder if I made the right decision. Observing the current debate on health care, I try not to panic pre-emptively about any policies, but it’s hard to maintain the balance between staying informed and worrying too much.

In some respects, I feel like an old pro at this now. But at every turn in 2008, when I began the process of buying my own insurance, I used the knowledge I had learned working at the research firm. What could have been classified as a writer’s quirky day job was given an ironic twist by the fact that for me, it was a necessity, both financially and personally. In every meeting with a health insurance broker since, one of the first sentences out of my mouth is, “I used to work in managed care…” I don’t say it was only part-time. I don’t tell them about the day my officemate and I looked up from spreadsheets filled with profits and enrollment numbers in a moment of exasperation. “I majored in English,” she said. “What about you?” “Journalism,” I replied. She smiled wryly. ”How did we get here?” she asked.  I present myself as an expert, even when I’m overwhelmed by information. I’m an aggressive self-advocate, a skill I learned writing my masters’ thesis about the social impact of seizures. My position and my studies fed each other to the point of fascination, and that has stuck.

In her essay, One Nation, Under the Weather, Lauren Slater writes, “We do not fall into illness. We fall from illness into temporary states of health.” I don’t live my day-to-day life obsessing over seizures, but there are times when I notice the good fortune of a “temporary state of health.” This writing is one example. My last seizure was June 21, 2015. That is an incredibly long stretch of time for me to go without one. Yet I’m under no illusions that I can take seizure freedom for granted, or that I somehow deserve it. Slater’s quote conveys the fact that science sometimes needs a dose of luck to help someone stay healthy. A person with a disability lives his or her life knowing that medicine and luck are often intertwined, and that even if she does everything right to maintain her health, it may not be enough. I don’t believe I am any more deserving than the next person sitting in a neurologist’s waiting room. I feel a sense of camaraderie with my fellow patients each year as I wait for my name to be called to see the doctor. We’re in this together, and we all deserve quality care.

Lacey Lyons is a writer, professor, and self-advocate who holds a master’s degree from Queens University of Charlotte and a B.S. from Belmont University. She teaches at Belmont University and is a board member of Disability Rights Tennessee. She has presented at the Tennessee Disability MegaConference and her writing has appeared in the Charlotte Viewpoint.