I was in college when I was diagnosed with fibromyalgia. I was on my mom’s health insurance plan through her employer, a university. “I’ve never taken any time off so you kids would always have health insurance,” she had often said, almost as frequently as she had reminded me she had given birth to me.
In February 2009, when I turned 24 and a half, my dad began telling me to start looking for an insurance plan because I had a pre-existing condition. This confused me. I was convinced I contributed to the healthy side of the risk pool equation. I had some muscle aches, but I managed it with yoga and the recommended prescription.
I was living in South America when I turned 25, and like that, I was off my mom’s insurance. Unlike many of my peers who “never got sick,” I wanted health insurance. I thought of it as the American, and the adult, thing to do.
I was rejected by two major national carriers and was offered coverage with reduced benefits from a third. Pharmacy was eliminated from the plan. So the policy would pay for me to see a primary care physician for say, bronchitis, but not cover the prescribed antibiotic?
Here I was hoping to get a job in health policy as debates around health reform were heating up and I was slipping through the cracks.
I had never had a full-time job (I went from undergrad to grad school), so I wasn’t eligible for COBRA or HIPAA, my stipend made me too wealthy for Medicaid and I was 40 years too young for Medicare. I was like a lot of uninsured Americans who wanted health insurance – mandate or not – but who fit the wrong profile.
When I returned to the U.S., I took a temp job and qualified for their health insurance. Trying to be responsible, I decided to establish a relationship with a primary care provider. Unclear about the fine print of my policy, I went to a safety net clinic. A baseline blood sample is part of their routine new patient work-up. I said I was willing to wait until they could assure me that my insurance would cover the lab work.
“You won’t end up paying more than about $60,” the phlebotomist assured me. I closed my eyes and winced as he drew my blood, hoping I wasn’t being too trusting. Months later, I received a bill for $800. The clinic worked with me; fortunately they were well equipped to advocate for patients. In the end I owed $25.
I could have told them I didn’t need a $250 Chlamydia test; I had no risk factors, no symptoms. Had someone told me - when I asked - what tests they were running and how much each cost, I would have asked the doctor to justify certain decisions.
Even so, they explained, because each insurance company is different, it’s hard to predict the total bill. Who has these kinds of resources? One vial of blood can turn into a $5 or $800 bill. This was not shared-decision making.
The story ends well (for me). I got a job and signed up for health insurance my first day. My experience of being underinsured made me aware of the cost of medicine in the U.S., the rationale behind cost-sharing, the importance of shared-decision making. Health Reform was first something I observed from a distance, and then the struggle to gain healthcare coverage became my reality. Now I understand first-hand many of the problems that health reform tries to address.
Shana Montrose is an Emerging Leader Fellow with Health and Human Service in Washington D.C. She works on private market insurance reforms at the Center for Consumer Information and Insurance Oversight at the Centers for Medicare and Medicaid Services. She is a Denver native and is on rotation with the Exchange Planning Team for the summer.