A Cancer Patient's Opinion on Health Reform: Focus on Enhancing System's Assets

By Kenneth H. Bacon
Special to The Washington Post
Tuesday, July 21, 2009

I am both an unlucky and a lucky cancer patient. I am unlucky because the cancer I have, melanoma, is aggressive, complex and difficult to treat, and mine has spread from a mole on my skin, through my bloodstream, to my brain.

I am lucky to be prolonging my life with the world's best doctors in the world's most advanced medical system, which I use intensively at a relatively low cost to me through employer-provided insurance.

When we think of reform, we concentrate on what needs fixing, and there is plenty wrong with the U.S. health-care system. But it is also important to focus on what needs to be protected or enhanced. From this patient's perspective, the current reform effort must do five things:

-- Emphasize prevention, early detection and early intervention.

-- Maximize online efficiencies to reduce paperwork and streamline data.

-- Protect the patient-doctor relationship.

-- Address the insurance/quality-of-care gap.

-- Increase funding for medical research.

If detected early, melanoma is easily treatable. But in spite of regular checkups and a known family history of melanoma, my then dermatologist failed to discover the malignant lesion until it was too late. By the time the mole was removed, the cancer cells had already entered my bloodstream. The tumor in my brain was discovered 18 months later.

New tools have emerged for the difficult task of finding and treating the subtle seeds of this disease. For example, recent work indicates that 60 percent of melanomas have a genetic mutation called BRAF that can be precisely targeted by inhibiting the protein it produces, a technique now being tested in clinical trials.

Gene testing is expensive, and targeted molecular therapy is still in development, but these could be keys to earlier interventions and more effective, possibly lifesaving treatment.

Maximizing the efficiencies of the Internet to process paperwork and data would both reduce costs and help improve the patient-doctor relationship. My oncologist has spent hours filling out forms and arguing with the insurance company to arrange coverage for my chemotherapy. In exasperation, thinking I'd have more sway, he even suggested that I call my insurer's CEO to facilitate approval. That is time he could have spent talking to me or other patients. Now my wife and I are waging our own fight with the provider to arrange payment for my daily brain radiation, which has been rejected as "not medically necessary" even though the cancer in my brain is growing rapidly.

Never underestimate the value of a good doctor-patient relationship.

My open line to my doctor is a blessing, though not to be abused. Desperate for sleep, I paged him last week to help me rejigger my medication schedule and dosages, and when my wife and I worried that new side effects might be due to radiation or the tumor, he helped us parse it out.

Many blame the over-prescription of tests and scans for driving up health-care costs. This is where insurance costs and quality of care need to be reconciled. Scans, including MRIs, CT and PET scans, are crucial to detecting and monitoring the treatment of cancer. I have had dozens of scans, and I believe none were prescribed casually or unnecessarily.

In fact, an earlier MRI of my brain might have led to faster, more effective treatment. Perhaps we need outcome-based guidelines on the prescription of expensive tests and scans but, at the very least, it would be a mistake to make it more difficult for patients, guided by their doctors' judgment, to use these important tools for earlier detection.

Finally, the goal of many cancer patients is to stay alive long enough for scientists to develop a cure or a combination of therapies that can turn the disease from a killer to a chronic illness, as we have been able to do with HIV/AIDS. President Obama's economic stimulus package added more than $10 billion to the research budget of the National Institutes of Health; but given that the death rate for cancer has dropped only slightly over the past half-century, we need more money for research and for clinical trials to test new therapies.

For me and other Americans suffering from advanced cancer, the health-care debate this summer is no abstraction. It is a matter of life or death.

Kenneth H. Bacon is the president of Refugees International, and was chief Pentagon spokesman during the Clinton administration.

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