Hoping for Health Care Before, During and After Cancer

When I was 22, I had a miscarriage, which entailed a trip to the emergency room and a medical bill. As uninsured as I was naïve, I was bailed out by my parents, who had little money to spare. I never forgot that kindness.

Getting insurance shortly thereafter was an eye-opener because the contract arrived with a caveat. Never, ever, for all time, would that insurance company reimburse for anything to do with my female anatomy (ovaries, uterus, birth canal — you get the picture). It would not cover another miscarriage, a pregnancy, cancer, etc. My uterus was officially a pariah.

Defensive of my anatomy, I wrote the insurance company to explain the facts of life and how common miscarriages are in the first trimester. My argument was rewarded with a revision to the policy, my uterus given a reprieve. I could have children, get cancer, whatever, although there would be no coverage for a miscarriage for a whole year. I could live with a compromise.

Some years after this introduction to the fine print of insurance, I watched my mother debate with her insurance supplier over refusal to pay for a chest X-ray after her diagnosis of breast cancer. My mother got out her pen and wrote a letter, presenting the facts (how cancer in the breast is likely to go into the chest wall), and she got her reimbursement.

Experiences like these have taught me a few lessons. First, charity begins at home. Second, do not always take "no" for an answer when it comes to healthcare. Third, if "no" means "no," persist. For example, "no" happened when my mother was prescribed Tamoxifen as standard adjuvant cancer chemotherapy. Medicare would not pay. Seeking advice, I called The American Breast Cancer Foundation to explore how women with little or no insurance, who cannot afford uninsured breast cancer treatments, can pay for them.

After talking to the foundation, I felt better equipped to help my mother. Fortunately, as there are now, there were multiple ways for persons of limited means to seek assistance to take advantage of therapies that could extend their lives. Ultimately, though, rather than following through to seek charitable assistance through the channels suggested, I paid out of my pocket for five years. It was time for me to return my parents’ kindness.

Fast forward. With a breast cancer diagnosis at 54, I fretted about finances even though I had insurance and health savings. I had, in fact, a low-premium, high-deductible policy. Would it save me? I never questioned that it would until somebody told me that I should change to a more expensive policy because I would need "the Cadillac of plans" going forward with cancer. Would I? I did some research, which included talking to a representative at my insurance company, who assured me that I would receive the same quality of care, no matter how high or low my premium.

The sort of policy I have works if you are able to save ahead to pay a high deductible, which I have been fortunate to be able to do. Rather than paying for a premium with a lower deductible, I squirrel away what I would spend on a higher premium into a health savings account. Now that I am older, I am saving a little more than the deductible on the off chance I will need to go out of network in the future (cancer can be full of surprises). I am fortunate to be in a job that subsidizes the premium and also frugal enough to save.

Lately, though, I wonder what the future holds. Sometimes I worry — watching news about healthcare debates, the fate of pre-existing conditions and our insurance system — if I will ever retire or have to work until I drop dead to remain insured. (By the way, I still have my uterus, which gave me a wonderful son and remains healthy post-miscarriage and post-menopause.) Then I take a deep breath and trust that intelligent, compassionate people will make responsible choices affecting a nation. Knock on wood.

One day when I was reclining in my chair in the chemotherapy room, taking advantage of insurance that covered an expensive drug for nausea, I overheard a conversation that reminded me of the one I had years before with a woman at The American Breast Cancer Foundation. If you could not afford Emend (a drug that helps to prevent nausea and vomiting), a voice explained, there were charitable options. Call me naïve, but I believe there will always be options for people with cancer.