[Pharm-policy] [Fwd: Washington Post: Schering HCV "Coalitions"]

[Paul Davis]

James Learned wrote:
> 
> Washington Post Article online:
> http://www.washingtonpost.com/wp-dyn/articles/A52480-2000Sep11.html
> 
> Grass Roots Seeded by Drugmaker
> 
> By Robert O'Harrow Jr.
> Washington Post Staff Writer
> Tuesday , September 12, 2000 ; A01
> 
> Showing all the signs of a thriving grass-roots movement, a host of new
> health-care groups are drawing attention to the perils of a contagious,
> sometimes lethal virus called hepatitis C.
> 
> Hundreds of doctors, community leaders and public-health officials have
> volunteered for the hepatitis C coalitions in 11 states. Members distribute
> thick information packets to educate the public about what they term the
> "silent killer" and the "millennium epidemic." Organizers have begun
> pressing state legislators to spend more to fight the disease, which attacks
> the liver and affects about 4 million Americans.
> 
> "Collectively we can have a powerful impact in providing education regarding
> Hepatitis C," said a recruitment letter from the group in New York.
> 
> But contrary to appearances, these coalitions are not spontaneous gatherings
> of concerned citizens. They are instead a key part of a carefully
> orchestrated marketing campaign funded by Schering-Plough Corp. to sell the
> primary therapy for hepatitis C, Rebetron, which costs $18,000 a year.
> 
> The first coalition was started in Minnesota in late 1997 by a Schering-paid
> public relations executive, even as the drug was awaiting approval for sale.
> 
> The coalitions' toll-free phone numbers are paid for by the drugmaker.
> 
> Several coalition officials, including former senator Donald W. Riegle Jr.
> (D-Mich.), are on the payroll of Shandwick International, the public
> relations firm Schering hired to run the effort. And, in a practice that may
> violate Food and Drug Administration rules, Shandwick helped prepare scripts
> for the 800-number operators and educational materials sent out to patients.
> 
> The drugmaker'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."
> 
> It bothers Allan Rosenfield, too. The dean of Columbia University's Mailman
> School of Public Health, Rosenfield said he was under the impression when he
> joined the board of the New York coalition that Schering had provided only a
> small grant. But when told the extent of Schering's involvement, he said,
> "It just goes beyond what I think is appropriate."
> 
> He said he intends to resign from the group. "I don't like what I've
> learned," he said. "Sometimes marketing people in these companies don't use
> good sense."
> 
> Schering-Plough spokesman Robert Consalvo defends the company's actions. The
> aim, he said, is to educate people about an insidious and little-known
> blood-borne disease--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 acknowledged, however, that the coalition effort is funded by the
> company's marketing branch, not its charitable arm. He wouldn't say how much
> has been spent.
> 
> 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 Heath.
> 
> Consalvo denied that the company is being secretive, noting that some
> coalitions cite Schering, in small print and on some documents, 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. It said that "all Hepatitis C Coalition
> communications such as invitation letters and press materials will contain
> the phrase 'Supported by seed funding from Schering-Plough Corporation' to
> alleviate any potential concerns about disclosure."
> 
> Thomas W. Abrams, director of the FDA's division of drug marketing,
> advertising and communications, said his agency generally does not 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 that he wasn't commenting
> directly on Schering's involvement in the coalitions.
> 
> Rebetron is not supposed to be named in educational materials, Consalvo
> said, and it did not appear to be. The company knows its product doesn't
> have to be mentioned because it is considered the "gold standard" treatment
> that the vast majority of doctors would prescribe, he acknowledged.
> 
> There's no question 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 lay 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, according to the CDC, but the number of people
> expected to suffer liver damage or need transplants is expected to increase.
> 
> In July, to underscore the challenge ahead, U.S. Surgeon General David
> Satcher asked Congress to distribute a letter to constituents about the
> dangers of hepatitis C.
> 
> While Schering says it is attempting to meet that challenge with the
> coalitions, the groups are also part of a broader Schering effort to promote
> sales of Rebetron.
> 
> Shandwick works closely with the American Liver Foundation, a nonprofit
> group that has received about $2.5 million over the past five years from
> Schering, according to federal tax records and ALF officials. That includes
> a pledge of $50,000 to the ALF's New York chapter to pay for a full-time
> staff person to work with Shandwick.
> 
> Those donations helped the ALF to grow from two full-time staff members in
> one office to 30 full-time employees in 20 offices around the country,
> foundation officials said. Donations from Schering last year accounted for
> more than 12 percent of the group's budget, they added.
> 
> The company also has paid more than $400,000 since 1997 to a Washington
> lobbying firm that has pressed Congress to ensure that veterans with
> hepatitis C are covered for treatment, according to a database of lobby
> records maintained by the Center for Responsive Politics.
> 
> That firm, Health Policy Analysts, has worked closely with Reps. Victor F.
> Snyder (D-Ark.) and Christopher Shays (R-Conn.), both of whom have held
> hearings about veterans infected with hepatitis C, according to aides.
> Snyder also sponsored a bill to ensure veterans are covered.
> 
> Schering also was a founding member of the Frontline Healthcare Workers
> Safety Foundation in Atlanta in 1998. The foundation sponsored a conference
> last month about the accidental exposure of health-care workers to hepatitis
> C.
> 
> The center of Schering's coalition effort is the Shandwick office in
> Minneapolis. Portraying themselves in letters and other documents as
> coalition insiders, public relations specialists there have built databases
> of potential volunteers, trained patients how to discuss their ailment with
> the media and packaged educational materials for use across the country.
> 
> Patients and others seeking more information are told to call toll-free
> numbers assigned to the state coalitions. Operators who answer the calls
> identify themselves as part of the groups but are paid by Schering,
> according to officials at Convergys Corp., the telemarketing company that
> handles the calls in Utah.
> 
> Schering spokesman Consalvo said his company did not pay for the lines or
> write the scripts that operators used. Such an arrangement could run afoul
> of FDA rules, he said. So the Hep C Connection, a nonprofit group in Denver
> funded by Schering, pays the bills at Convergys, he said.
> 
> Not so, said Convergys spokesman John Pratt. "It belongs to Schering 100
> percent," he said of the information collected by the operators. "Our
> contract is with Schering-Plough."
> 
> Nancy Longley, a Shandwick senior vice president, said her company and its
> consultants have worked hard to "go out and build the infrastructure" of an
> "information, education and awareness network."
> 
> Members listed on the coalitions' documents include government and private
> public-health officials, veterans groups, corrections workers, firefighters,
> unions and community groups.
> 
> The plan is to build the groups and then hand off control to others, she
> said, but that hasn't happened yet. Schering would remain a member, she
> said.
> 
> Coalitions are operating or under development in Arizona, California,
> Illinois, Massachusetts, Michigan, Minnesota, Nevada, New York, Ohio,
> Pennsylvania and Washington state, she said.
> 
> The hope, Longley said, is that the coalitions would have more impact on
> people than a costly advertising campaign. She denied intentionally
> deceiving anyone.
> 
> Some participants say it is rarely clear who is behind the efforts, however.
> 
> James Learned, a public-health educator in New York, said he was ready to
> volunteer after receiving a letter signed by "Diane Thompson, New York State
> Hepatitis C Coalition." As it happens, Thompson actually works for
> Shandwick.
> 
> "When I got these letters, I bought it," Learned said. He became suspicious
> when he noticed details, such as out-of-town telephone numbers for the
> organizers, that seemed inconsistent with a local grass-roots group. "I felt
> totally manipulated," he said. "It went against everything I work for as a
> health educator."
> 
> In Michigan, Riegle, the honorary co-chairman of the state coalition, showed
> up at the Detroit News last fall with a hepatitis C patient to press for a
> news story about the urgency of the problem.
> 
> But Riegle didn't mention to the News reporter that he is deputy chairman of
> Shandwick. He said in a recent interview that he didn't think it was
> necessary because he was volunteering for the group and "this is a medical
> issue I happen to believe in."
> 
> "I don't see who's being harmed," he said. "I went along on a pro bono
> basis. . . . I was there on my own behalf."
> 
> In Massachusetts, a news release directed callers to "Kathy Keough of
> Massachusetts Hepatitis C Coalition." Keough is a drug industry consultant
> hired by Shandwick to run the group. She was not familiar with details of
> the press release, she said, because it was written by Shandwick officials
> in Minneapolis.
> 
> Robert Gish, a physician and member of the California coalition who said he
> has received grants from Schering, said the drugmaker should be praised for
> doing a job he contends the federal government has failed to do. "They're
> doing a service far in excess of questions a person might raise," said,
> Gish, a liver and hepatitis C specialist.
> 
> Marcia Angell, a physician who recently stepped down as editor of the New
> England Journal of Medicine, worries about the effect the coalitions could
> have on people's faith in public-health campaigns. "It looks balanced. But
> how do you know?" Angell said.
> 
> Schering's role "underscores for me the fact that drug companies cannot be
> in education," she said. "They can't because it's a conflict. Their primary
> mission is to increase the bottom line for shareholders."
> 
> Alfred DeMaria, director of communicable-disease control at the
> Massachusetts Department of Public Health, said the coalitions are raising
> public awareness of hepatitis C. But he said he's "somewhat concerned" about
> Schering's role.
> 
> "There's a fine line," said DeMaria, who was asked to join his state's
> coalition but declined. "It's an unusual way of marketing."
> 
> © 2000 The Washington Post Company
> 
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