Health

 

How a bone disease was redefined to create a blockbuster, super-profitable drug

npr.org | 01/04/11

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Read More: Bone, Osteopenia, Osteoporosis, World Health Organization

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Katie Benghauser had no concept of all the forces that combined to bring the box of pills to the bottom shelf of her medicine cabinet. All she knew was that three years ago she went in for a routine checkup and her doctor told her it was time for her to take a test.

Not that there was anything in particular about Benghauser that suggested sickness. At 54 she exercised every day and could outrun most 20-year-olds. She was a model of health.

Still, because Benghauser was thin, white, female, in her 50s and had a sister who had some bone problems, she says the doctor told her that she was concerned. "She felt like because my frame is slight and I'm female, that I was at risk for developing osteoporosis."

Osteoporosis is a disease that causes bones to become thinner, more porous and break more easily. It mostly affects elderly women, who can be devastated by a fall that breaks their hip. One in five elderly women who break a hip will die within a year. Still, just to make sure, Benghauser went in for a test that measured the density of her bones. Two weeks later a letter came in the mail with an unsettling message: Benghauser had a condition called osteopenia, and her doctor recommended medication.

Osteopenia Vs. Osteoporosis

Osteopenia is different from osteoporosis. In fact, though Benghauser is extremely health conscious, she wasn't familiar with it. "I'd heard of osteoporosis before, but I'd never heard of osteopenia," she says.

Osteopenia, it turns out, is a slight thinning of the bones that occurs naturally as women get older and typically doesn't result in disabling bone breaks. Still, Benghauser's doctor recommended that she go on treatment. As Benghauser asked around, it turned out that many of her peers were taking the pills. For example, she works in an office in Richmond, Va., with seven other women.

"Half the staff is younger, in their 20s and 30s, and then there are four of us that are over 50," she said. "Three of those four are on some kind of medication for osteopenia."

The Biography Of A Medication

This is the story of how pills for osteopenia ended up in Benghauser's medicine cabinet, and in the medicine cabinets of millions of women like her all over the United States. But more broadly, it's the story of how the definition of what constitutes a disease evolves, and the role that drug companies can play in that evolution.

Osteopenia is a condition that only recently started to be thought of as a problem that required treatment. Until the early 1990s, only a handful of people had even heard the word. And to understand how osteopenia was transformed from a rarely heard word into a problem that millions of women swallow pills to treat, you need to go back to the beginning, to a place very far away from Benghauser's suburban Virginia home.

A Meeting, A Decision, A Disease

The meeting took place in Rome, in a small hotel at the top of the Spanish Steps. There in 1992, a group of osteoporosis experts gathered under the auspices of the World Health Organization. The meeting had been organized because professional opinion about how to diagnose and measure osteoporosis was all over the map. Doctors and researchers didn't even have a shared view of how osteoporosis should be defined.

Read the whole story here.



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