Series shows more than science involved in defining disease

The Seattle Times: Series shows more than science involved in defining disease

Series shows more than science involved in defining disease
By Michael R. Fancher, Seattle Times executive editor, June 26, 2005

A woman is healthy one day, but the next day she has a life-threatening disease. Nothing in her physical condition has changed. How can this be?

The answer to this riddle involves billions of dollars in health-care costs and likely touches the life of everyone reading this newspaper. It's what The Seattle Times calls becoming "Suddenly Sick," the title of a five-part series beginning today.

The woman is healthy one day, diseased the next because the definition of the disease has changed, even though her health hasn't. The series says that every time the definition for a disease is expanded, the market for drugs expands by millions of consumers and billions of dollars.

Most of us typically think of disease in black and white; you have it or you don't. For diseases such as cancer or tuberculosis, a clear determination can be made, and it is scientifically based.

But for such diseases as hypertension, obesity and osteoporosis, the determination is based on boundaries and definitions.

"We found that with the so-called 'lifestyle diseases,' forces other than science affect where the lines are drawn," said Times Managing Editor David Boardman.

"How the line is drawn and who drew it has implications for individuals and society in general," he added.

Reporter Susan Kelleher first started thinking about those implications several years ago at a medical conference in Toronto. Health-care experts were debating how to set the boundaries that define osteoporosis, with huge financial consequences for insurance companies, physicians, researchers and, especially, pharmaceutical companies.

She became fascinated by the politics of osteoporosis and what she would come to realize was the "guidelines industry," the slippery science of defining diseases.

"I had spent 10 years covering health care and I was oblivious to it," she said.

Those years included being the lead reporter on The Orange County Register's Pulitzer Prize-winning investigation of a fertility clinic at the University of California, Irvine. Doctors there stole eggs from infertile patients and used them for other women who needed donor eggs to get pregnant.

The guidelines industry wasn't that kind of "gotcha" investigation. Kelleher said she knew it was important, but the story didn't crystallize immediately.

She would think about it when she saw "scare-you stories" in women's magazines and other media. Those stories warn of the growing risks of diseases but seldom ask, "Who says so?"

She would think about it as more and more television commercials pushed the preventive value of new drugs. There didn't seem to be much skepticism to a system so driven by pharmaceutical companies.

She thought about the riddle — you go to sleep one night and wake up with a disease. What happened overnight?

Over time, Kelleher would gather string for the story, exploring thousands of pages of documents from the Food and Drug Administration, searching patents and examining financial records of pharmaceutical companies.

"It's like a puzzle. It's probably the most complicated story that I've ever done," she said.

Boardman said a pattern emerged as Kelleher and reporter Duff Wilson, now with The New York Times, explored various aspects of the guidelines system. The numbers always moved in the same direction, with the boundaries of disease — and the market for drugs — expanding.

"We never saw an opposite example," Boardman said.

"Suddenly Sick" reveals how the system works. There are good intentions throughout the system to help people live healthier and longer. But, there is also growing discomfort among some medical practitioners at how much influence the drug industry has obtained.

"It's a huge factor in escalating health-care costs," Boardman said.

Worst of all, the series points out, people may be taking medications that have greater risks than the underlying condition for which they are prescribed.

Kelleher believes the series will arm readers with information they can use in managing their own health care.

"When you fully understand the way things work," she said, "you automatically ask different questions."

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