Drug firm's role in anti-disease groups questioned

<b>By Robert O'Hara Jr. / Washington Post </b><br><br>Showing all the signs of a thriving grass-roots movement, a host of new health-care groups is drawing attention to the perils of the contagious,

Wednesday, September 13th 2000, 12:00 am

By: News On 6

By Robert O'Hara Jr. / Washington Post

Showing all the signs of a thriving grass-roots movement, a host of new health-care groups is drawing attention to the perils of the contagious, sometimes lethal hepatitis C virus.

Hundreds of doctors, community leaders and public-health officials have volunteered for hepatitis C coalitions in 11 states. Members distribute thick information packets to educate the public, and organizers are pressing state legislators to spend more on the liver disease, which affects about 4 million Americans.

But these coalitions are not spontaneous gatherings of concerned citizens. Instead, they're key to a carefully orchestrated marketing campaign funded by Schering-Plough Corp. to sell Rebetron, the primary therapy for hepatitis C, which costs $18,000 a year.

A public relations executive paid by Schering started the first coalition in Minnesota in late 1997, even as the drug was awaiting approval for sale.

Several coalition officials are on the payroll of Shandwick International, the public relations firm Schering hired to run the effort. And Shandwick helped prepare scripts for operators of the coalitions' toll-free numbers and educational materials sent out to patients â€“ a practice that may violate Food and Drug Administration rules.

Schering's campaign offers a vivid look at a public relations tactic gaining currency in corporate America: the use of "AstroTurf" or "grass-tops" groups posing as authentic local organizations to promote a product or political aim.

"What they're doing is typical of the PR industry, but [something] we are never supposed to notice or see," said John Stauber of the Center for Media & Democracy, a nonprofit advocacy group that tracks the industry. "What they want is credibility."

Medical ethics experts agree that more should be done to educate people about hepatitis C. But some say the Schering-funded coalitions raise troubling conflict-of-interest issues.

"It's ethically problematic when a company creates entities but then tries to pass them off as authentic and spontaneous grass-roots organizations," said Thomas Murray, president of the Hastings Center, a nonprofit group that examines medical ethics. "What bothers me is the deceptiveness."

Doctor concerned

It bothers Dr. Allan Rosenfield, too. The dean of Columbia University's Mailman School of Public Health said he was under the impression when he joined the board of the New York coalition that Schering had provided only a small grant. When told the extent of Schering's involvement, he said, "It just goes beyond what I think is appropriate.

"I don't like what I've learned," said Dr. Rosenfield, who intends to resign. "Sometimes marketing people in these companies don't use good sense."

Schering-Plough spokesman Robert Consalvo defends the company's actions, saying the aim is to educate people about an insidious and little-known blood-borne disease â€“ as well as to boost sales of Rebetron.

"There is a great need for more information about hepatitis C," he said. "Ultimately, our hope is those patients will use our product."

He said the coalition effort is funded by the company's marketing branch, not its charitable arm.
Sales of Rebetron, a combination medicine containing both ribavirin and interferon, have increased more than 60 percent over the past two years, from $363 million to $586 million, according to IMS Health, a health-care information company.

Mr. Consalvo said the company is not being secretive, noting that some coalitions cite Schering as providing an "educational grant" or an "unrestricted educational grant." The company also is listed among scores of other groups as a member of the coalitions.

Late last month, however, in response to questions from The Washington Post, a Shandwick official acknowledged that the phrase "educational grant" was misleading. Shandwick issued a letter to all coalitions promising to better inform people of the company's role.

Thomas W. Abrams, director of the FDA's division of drug marketing, advertising and communications, said his agency generally doesn't interfere with "unrestricted educational grants" that companies make to promote good public health awareness.

"We would, however, become concerned if a drug company controlled or influenced the content of information disseminated by the seemingly independent organization," he said. He noted he wasn't commenting on Schering's involvement in the coalitions.

Leading treatment

Rebetron isn't supposed to be named in educational materials, Mr. Consalvo said, and it did not appear to be. The company knows its product doesn't have to be mentioned because it's considered the "gold standard" treatment that most doctors would prescribe, he acknowledged.
The coalitions, which operate or are under development in Arizona, California, Illinois, Massachusetts, Michigan, Minnesota, Nevada, New York, Ohio, Pennsylvania and Washington state, are part of a broader Schering effort to promote Rebetron.

Shandwick works closely with the nonprofit American Liver Foundation and was a founding member of the Frontline Healthcare Workers Safety Foundation in Atlanta, which sponsored an August conference about the accidental exposure of health-care workers to hepatitis C.

Hepatitis C poses a major health education challenge. Many of those infected have had it for years and don't know it, according to the Centers for Disease Control and Prevention. The disease can lie dormant for years before damaging the liver.

People at risk include users of injection drugs, people who have had numerous unprotected sexual contacts and those who received blood transfusions before 1992. The number of new infections has dropped dramatically in recent years, but the number of people expected to suffer liver damage or need transplants is expected to increase.