Andrew Weil, healthcare reform, and my cousin Janet

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President Obama believes that the primary goal of healthcare reform is to provide access to the millions of Americans who currently have no health insurance. Dr. Andrew Weil, writing in today’s Huffington Post (The Wrong Diagnosis), thinks he knows better, as the title of his article implies.

But what’s missing, tragically, is a diagnosis of the real, far more fundamental problem, which is that what’s even worse than its stratospheric cost is the fact that American health care doesn’t fulfill its prime directive — it does not help people become or stay healthy. It’s not a health care system at all; it’s a disease management system, and making the current system cheaper and more accessible will just spread the dysfunction more broadly.

It sounds great, but it means nothing. It is widely recognized by healthcare economists that preventive care does not save money. Everyone from the Congressional Budget Office on down has acknowledged this. Preventive care saves lives, but it does not save money.

But there’s a deeper problem with Dr. Weil’s pronouncement. Those who cannot seek even basic care for their “disease management” are suffering horrifically and are not helped by fancy words about “staying healthy.” Instead of worrying about how to get more for those who already have plenty, let’s focus our attention on those who have none.

I wish Dr. Weil could have met my cousin Janet, but it’s too late now. Janet is dead. She died because she didn’t have health insurance. Perhaps he would think twice about pandering to the “worried well” and start thinking about people who are dying because they have no access to any healthcare at all.

My cousin Janet was a lovely, vivacious, and kind person. She would give you the shirt off her back, even when, as was often the case, the shirt on her back was all she had. Janet suffered from intermittent bouts of debilitating mental illness. Although she was bright, educated and hard working, her frequent relapses made it difficult for her to hold a steady job. As a result, she often supported herself by menial work such as cleaning houses. And as a result, she never had health insurance.

Janet was an enthusiastic proponent of alternative health and preventive care. She tried to care for herself every way that she knew how. She had no other choice.

When she called me early one bleak Sunday morning to tell me that she had a lump in her breast, I began calculating how we might get her access to healthcare. Early stage breast cancer is highly curable, and Janet was otherwise young (mid 40’s) and healthy. I started to explain that it was very possible that the lump was benign and might not require any care beyond surgical removal.

But Janet interrupted me. She didn’t think that was likely. Why not? Well, the lump had been there for 5 years. How big was it? The size of a lemon!

“Oh, Janet,” I cried, “why didn’t you go to the doctor?”

“I couldn’t,” she explained. “I didn’t have any health insurance and I had no money to pay a doctor.”

Ultimately, through the efforts of family, we got Janet to a doctor. An evaluation showed that she had stage IV breast cancer, with metastases in her spine and skull. The state where she lived, unlike mine, provided no aid for people without health insurance, but Janet qualified for money from a foundation that exists specifically to help breast cancer patients who have no other means to pay.

Janet found an excellent oncologist, who was honest about her grim prognosis, but felt that with aggressive treatment she could enjoy 3-4 years of high quality life. The oncologist was right. Janet lived almost 4 more years and died at the age of only 50, leaving her mother, family and friends bereft.

It’s a shame that Dr. Weil is ignoring people like Janet. Prattling about wasting time on “disease management” sounds great to people who have no diseases, but is unutterably cruel to those who are suffering and need help now.