As a teenager and young adult, I always felt more comfortable with people who were older than me. When I was diagnosed with my first early-stage melanoma at 18, I realized I had even more in common with older people. Suddenly I was a cancer survivor, and concerned with things like health insurance. I have no idea what my first melanoma cost my parents in out-of-pocket expenses, but I know they felt fortunate to have comprehensive health insurance to cover the biopsies, skin-graft surgery and follow-up care.
My second melanoma happened when I was 23 and a waitress (with a college degree!). After graduating from college I was no longer eligible to be on my father’s insurance through his employer. My hours during the slow season didn’t always add up to full-time work, so I was not eligible for group health insurance through the restaurant. I applied to several companies for individual [health insurance] coverage but was always turned down, most likely due to my history of melanoma. I was forced to pay $250 a month for COBRA coverage, but I felt very lucky to have supportive parents who helped me find and pay for health insurance. And my employer agreed to schedule me for outdoor shifts only at night so I wouldn’t have to work all day in the summer sun.
In my mid-20s I was accepted into a Ph.D. program for research psychology. Knowing that I wouldn’t be able to obtain health insurance on my own, I was relieved to learn that the school offered health insurance for its students, an HMO. The first year I was in school the coverage cost about $1,200, and each year it went up by about $150. That was more than 10% of my income at the time. Without financial assistance from my parents I don’t think I would have been able to afford it.
At 26, at the beginning of the school year, I was diagnosed with my third and most serious melanoma. Although thankful to have insurance, I was routinely frustrated that the student health center was my required primary care provider. Each time I went in for a referral I saw a different doctor, and I would have to explain my history and my current biopsies. They all had a hard time believing that someone as young as me had a history of cancer and a good chance of having cancer again. As many survivors know, having to summarize your medical situation again and again for providers unfamiliar with your case can be tough, and draining, when your cancer seems like a chronic health situation.
Although I was required to go to the student health center, they were not set up to deal with serious medical issues. During one biopsy I received contaminated stitches, and a few days later I developed a serious infection. The health center was closed so I went to the emergency room for treatment. I reacted poorly to the penicillin I was prescribed in the ER, so I went back to the health center (which was open by that time) — and they sent me to another ER for care.
Since the student health center was my primary care provider I also went there for follow-up care, like having stitches removed after biopsies. I spent a very frustrating 45 minutes with one physician assistant who insisted that the folks who had put my stitches in made them “too tight.” I didn’t know enough to ask for a doctor instead. When I finally started crying from the pain the PA inflicted by poking around in my surgical site, he called in a doctor. The doctor removed the stitches in less than 10 seconds. The unnecessary pain, frustration and subsequent scarring I experienced from that episode were small things compared to most cancer survivors’ experiences. But they probably wouldn’t have happened if a student health center was not my required primary care provider.
My third early-stage melanoma cost me about $1,000 in out-of-pocket expenses. This is a small amount for many people, but when you’re living on a graduate student stipend in the Washington, D.C. area, it’s a fortune. Almost one-third of my student loan paid for my medical expenses that semester, including the short-term counseling that I finally admitted I needed.
In 2002 I accepted a job offer from the federal government. The prospect of a steady job and adequate health insurance was one of the many reasons I was interested in public service. I also relish that my job allows me to give back and work with the patient advocacy community.
At a time in life when my peers were looking for a dermatologist who could improve their skin, I was looking for one who was really good at spotting cancer and wouldn’t lecture me needlessly about wearing sunscreen. At a time in life when my friends were worried about what to wear on a date, I was worried about what I could wear on a date that would cover up my most recent biopsy site. At a time in life when people my age were trying to figure out what to do with their lives, I was happy to have a life to figure out.