Healthy skepticism: Reform helps, but as my case proves, it's only a first step

In April 2006, on a beautiful spring day, I was diagnosed with colon cancer. I'd had a colonoscopy when I turned 50 and had a few polyps removed. But I'd always been in good health. Then, several years later, I started losing weight for no apparent reason.

By the time the cancer was discovered, I needed immediate surgery. Fortunately, I was working at a job I loved and had a group health insurance plan through my employer. A large part of my colon was removed, and I spent several months recovering, followed by six months of chemotherapy. I received excellent care, covered — mostly — by my health insurance.

I hadn't thought much about health insurance until my diagnosis. I was glad I had it. It helped me sleep at night. Then, suddenly, it was a matter of life or death.

In spite of getting state-of-the-art treatment, my cancer metastasized, and the following December I was told I had reached "stage four" — not words I wanted to hear. Cancer has a way of doing that. Just when you might have it beat, a few hardy cells sneak back and all hell breaks loose. With the expert care of my oncologist, we kept at it, trying different regimes, some involving very expensive, targeted-therapy drugs.

During this time, my company changed insurance providers in an attempt to keep costs manageable. It meant higher deductibles and annual caps. But still, I had health insurance.

Then, in May of last year, I was laid off from my job of 20 years. I was suddenly unemployed in a field — museum collection management — that, to put it mildly, isn't in expansion mode. Because of President Obama's stimulus package, I have been able to maintain my insurance through the federal COBRA plan at a subsidized rate. But that program will end for me in September. Then what?

I do not call myself a survivor. The Titanic had survivors. They were the ones who got off the ship and made it to New York. I am in a very small, leaking lifeboat in a very cold, dark ocean. I describe myself as "living with cancer." "Cancer" is part of that phrase, but "living" is an equal part of the equation. So I keep at it. Thanks to health insurance, I can remain on a chemotherapy treatment that keeps the cancer at a slow walk rather than the canter it takes when I am not on it.

On Sunday, America witnessed a historic vote in the House. We have health-care reform that eventually will provide millions of people with access to health care they don't have now.

But the bill has many gaps, and I'm likely to be caught in one of them. Some of the provisions will take years to implement. And some that will be implemented sooner have unacceptable waiting periods. Take my situation.

The bill calls for the creation within three months of a high-risk pool providing subsidized insurance for people with preexisting conditions. That would certainly be me. But there's a catch. To qualify, a person must have had no health insurance for six months before an application can be filed. If I have to be without insurance for six months, I'm unlikely to live long enough to qualify for the plan.

With a pre-existing condition such as cancer, no insurance company will touch me without being required to. I have even considered applying for Social Security disability now, while I am still highly functional, so I would be eligible for Medicare. But that too is problematic. I need the coverage to prevent myself from becoming totally disabled; yet the coverage is only available to the totally disabled.

All of us are connected in some way to cancer or other devastating diseases. They don't discriminate.

Sunday's momentous legislation was an important first step. But health-care reform has not yet seen victory. What can you offer to people like me, other than hugs and well-wishes? Continue to write your representatives in Congress, for one. Propose ideas. Keep pushing. The conversation can't end here. Help me keep it alive.

Robert Hollister lives in Culver City, Calif. He wrote this for the Los Angeles Times.

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