It just keeps coming: more nonprofits called to task for drug company connections Posted by Rob at 02/16/06 12:45 PM

Last month there was coverage on congressional oversight investigations of drug company 'education' grants to patient advocate groups. Well, the stories just keep coming, a February 7 Washington Post story on groups like the American Diabetes Association and the National Osteoporosis Foundation further explores what can happen when nonprofit groups take money from drug companies.

According to the story, Bristol-Meyers Squibb donated more than $1 million to the ADA. Bristol-Meyers Squibb makes the drug muraglitazar, but information about potential problems with the drug are not easy to find on their web page:

For example, there is no information about research linking the drug to possible increased risk of fatal heart problems. Also, the Web site has yet to report that the Food and Drug Administration (FDA) approved the drug only on the condition that its maker . . .produce additional safety data first.

The article goes on to chide the National Osteoporosis Foundation for failing to explore questions about the drug Fosamax, and sites the organization's financial ties to the drugmaker.

Merck, the maker of Fosamax, is a longtime NOF donor, and it's named in NOF's annual report. But the organization does not disclose how much it gets from Merck and other supporters.

(You may recall: osteoporosis drugs have received some coverage lately over questions about drug company influence on research).

Marc Boutin with National Health Council (a group that includes nonprofits and drug companies) argues

that the disease advocacy groups are not in industry's pocket: Drug company money accounts for a relatively small part of most groups' budgets, he said. Plus, he added, most groups have guidelines to deal with any conflicts of interest these relationships might create.

Thomas Moore, a drug safety analyst at George Washington University Medical Center, isn't convinced that the guidelines are working.

"The whole system is unbalanced because there aren't any skeptical advocates out there," he said.

The NOF and the ADA explain that they put out safety information based on what the FDA says.

Like the NOF, the American Diabetes Association generally does not get involved in drug safety debates.

"No one in our arena does, because we don't have the data to know whether something is safe or not," said Richard Kahn, the ADA's scientific officer. In the case of muraglitazar, a drug not yet on the market, he said, the organization had to defer to the FDA because the agency has access to all of the company's clinical data.

Still, patients looking for information to help their condition may look to nonprofit organizations, expecting them to be patient advocates. Do these organizations have some obligation to alert people who may be taking drugs -- or are considerring taking them -- to potential safety problems?

After all, there's all kinds of hope and promise in new drugs based on clinical trial results. Sometimes that promise bears fruit, but sometimes serious safety concerns arise. We know -- from Vioxx, Paxil and other incidents -- that drug companies sometimes upsell benefits and downplay negatives. Because they've got money at stake, patients' trust in what drug companies promise has been eroded. Are we starting to see an erosion in the trust that people have patient advocacy groups that take drug company money?

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