What The Fight Is About

By Kathie Klarreich

The debate over patients' rights will never seem dry or academic to me. When a routine mammogram revealed a cancerous growth in my right breast earlier this year, I felt as though I had stumbled into a dark closet during a nightmare. The bad dream became worse when the doctor's office called to tell me that my insurance company wouldn't cover the biopsy I needed. I called the company, and a representative said I had been dropped because I had failed to send in a renewal form--odd, since my premiums were automatically billed to my credit-card account. I have always been conscientious about health insurance. I'm a single mom, and when my father died of leukemia 23 years ago, his coverage was the only thing that stood between my family and bankruptcy.

My insurer agreed to reinstate my policy and pay for the biopsy, and I thought I had escaped one nightmare. But then the company rejected more of my medical claims. It wanted to place a rider on my new policy canceling all breast-cancer coverage because I had a so-called pre-existing condition--fibrocystic, or "lumpy," breasts, which my doctor had known about and assured me are common and not precancerous. I believe the insurer used the condition as an excuse to reject my coverage. The company argued that I had been dishonest by not disclosing the condition. The argument cost me $50,000 and immeasurable psychic pain.

The company turned a deaf ear to the protests of my medical team--my gynecologist, radiologist and surgeon. In the end I canceled my policy, preferring to be uninsured rather than pay for a worthless plan. Under Florida law, I was entitled to nothing more than an internal review by the insurer--I couldn't sue in state court. But if the McCain-Edwards-Kennedy Patient Protection bill becomes law in something close to its current form, it would let me sue. (The alternative Breaux-Frist-Jeffords bill would allow a lawsuit but put more obstacles in the way.) I might be able to sue in federal court under existing law--a federal statute bans placing riders on policies because of pre-existing conditions--but it's costly and time consuming, and all I could win is the cost of treatment. And a lawsuit isn't the point. During my ordeal I didn't seek legal advice; I was too busy coping with a lumpectomy. I needed a forum in which to challenge the insurer. Under McCain-Edwards-Kennedy, I would get one. I would be able to demand an arbitration hearing about the company's decision, plead my case before an independent panel and have an oncologist testify that there's no link between lumpy breasts and cancer. If Breaux-Frist-Jeffords were law, the insurer would choose the physicians reviewing my case--an idea that doesn't comfort me.

I have reason to be grateful. My radiation therapy is over, and my prognosis is good. My doctors were so appalled at my situation that they gave me discounts. Their kindness, along with support from my family, allowed me to get the treatment I needed. But why should someone who pays for insurance have to depend on charity? We need a law that will let others like me get independent reviews of insurer and HMO decisions. That's what the fight in Washington is all about.

KATHIE KLARREICH is a freelance journalist who has reported for TIME.