FW: [HepC] HEP C INFO: Grass Roots Seeded by Drugmaker

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-----Original Message-----From: Demastus@... [mailto:Demastus@...]Sent: Wednesday, September 13, 2000 12:39 PMHepCegroupsSubject: [HepC] HEP C INFO: Grass Roots Seeded by Drugmaker

HEP C INFO - http://hepatitis-central.comGrass Roots Seeded by Drugmaker By O'Harrow Jr.Washington Post Staff WriterTuesday , September 12, 2000 ; A01 Showing all the signs of a thriving grass-roots movement, a host of newhealth-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 havevolunteered for the hepatitis C coalitions in 11 states. Membersdistribute thick information packets to educate the public about what theyterm the "silent killer" and the "millennium epidemic." Organizers havebegun pressing state legislators to spend more to fight the disease, whichattacks the liver and affects about 4 million Americans."Collectively we can have a powerful impact in providing educationregarding Hepatitis C," said a recruitment letter from the group in NewYork.But contrary to appearances, these coalitions are not spontaneousgatherings of concerned citizens. They are instead a key part of acarefully orchestrated marketing campaign funded by Schering-Plough Corp.to sell the primary therapy for hepatitis C, Rebetron, which costs $18,000a year.The first coalition was started in Minnesota in late 1997 by aSchering-paid public relations executive, even as the drug was awaitingapproval for sale.The coalitions' toll-free phone numbers are paid for by the drugmaker.Several coalition officials, including former senator W. Riegle Jr.(D-Mich.), are on the payroll of Shandwick International, the publicrelations firm Schering hired to run the effort. And, in a practice thatmay violate Food and Drug Administration rules, Shandwick helped preparescripts for the 800-number operators and educational materials sent out topatients.The drugmaker's campaign offers a vivid look at a public relations tacticgaining currency in corporate America: The use of "AstroTurf," or"grass-tops," groups posing as authentic local organizations to promote aproduct or political aim."What they're doing is typical of the PR industry, but [something] we arenever supposed to notice or see," said Stauber of the Center forMedia & 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 peopleabout hepatitis C. But some say the Schering-funded coalitions raisetroubling conflict-of-interest issues."It's ethically problematic when a company creates entities but then triesto pass them off as authentic and spontaneous grass-roots organizations,"said Murray, president of the Hastings Center, a nonprofit groupthat examines medical ethics. "What bothers me is the deceptiveness."It bothers Allan Rosenfield, too. The dean of Columbia University'sMailman School of Public Health, Rosenfield said he was under theimpression when he joined the board of the New York coalition thatSchering had provided only a small grant. But when told the extent ofSchering's involvement, he said, "It just goes beyond what I think isappropriate."He said he intends to resign from the group. "I don't like what I'velearned," he said. "Sometimes marketing people in these companies don'tuse good sense."Schering-Plough spokesman Consalvo defends the company's actions.The aim, he said, is to educate people about an insidious and little-knownblood-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 thecompany's marketing branch, not its charitable arm. He wouldn't say howmuch has been spent.Sales of Rebetron, a combination medicine containing both ribavirin andinterferon, 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 somecoalitions cite Schering, in small print and on some documents, asproviding an "educational grant" or an "unrestricted educational grant."The company also is listed among scores of other groups as a member of thecoalitions.Late last month, however, in response to questions from The WashingtonPost, a Shandwick official acknowledged that the phrase "educationalgrant" was misleading. Shandwick issued a letter to all coalitionspromising to better inform people of the company's role. It said that "allHepatitis C Coalition communications such as invitation letters and pressmaterials will contain the phrase 'Supported by seed funding fromSchering-Plough Corporation' to alleviate any potential concerns aboutdisclosure." W. Abrams, director of the FDA's division of drug marketing,advertising and communications, said his agency generally does notinterfere with "unrestricted educational grants" that companies make topromote good public health awareness."We would, however, become concerned if a drug company controlled orinfluenced the content of information disseminated by the seeminglyindependent organization," he said. He noted that he wasn't commentingdirectly on Schering's involvement in the coalitions.Rebetron is not supposed to be named in educational materials, Consalvosaid, and it did not appear to be. The company knows its product doesn'thave to be mentioned because it is considered the "gold standard"treatment that the vast majority of doctors would prescribe, heacknowledged.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, accordingto the Centers for Disease Control and Prevention. The disease can laydormant for years before damaging the liver.People at risk include users of injection drugs, people who have hadnumerous unprotected sexual contacts and those who received bloodtransfusions before 1992. The number of new infections has droppeddramatically in recent years, according to the CDC, but the number ofpeople expected to suffer liver damage or need transplants is expected toincrease.In July, to underscore the challenge ahead, U.S. Surgeon General Satcher asked Congress to distribute a letter to constituents about thedangers of hepatitis C.While Schering says it is attempting to meet that challenge with thecoalitions, the groups are also part of a broader Schering effort topromote sales of Rebetron.Shandwick works closely with the American Liver Foundation, a nonprofitgroup that has received about $2.5 million over the past five years fromSchering, according to federal tax records and ALF officials. Thatincludes a pledge of $50,000 to the ALF's New York chapter to pay for afull-time staff person to work with Shandwick.Those donations helped the ALF to grow from two full-time staff members inone office to 30 full-time employees in 20 offices around the country,foundation officials said. Donations from Schering last year accounted formore than 12 percent of the group's budget, they added.The company also has paid more than $400,000 since 1997 to a Washingtonlobbying firm that has pressed Congress to ensure that veterans withhepatitis C are covered for treatment, according to a database of lobbyrecords maintained by the Center for Responsive Politics.That firm, Health Policy Analysts, has worked closely with Reps. Victor F.Snyder (D-Ark.) and Shays (R-Conn.), both of whom have heldhearings 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 WorkersSafety Foundation in Atlanta in 1998. The foundation sponsored aconference last month about the accidental exposure of health-care workersto hepatitis C.The center of Schering's coalition effort is the Shandwick office inMinneapolis. Portraying themselves in letters and other documents ascoalition insiders, public relations specialists there have builtdatabases of potential volunteers, trained patients how to discuss theirailment with the media and packaged educational materials for use acrossthe country.Patients and others seeking more information are told to call toll-freenumbers assigned to the state coalitions. Operators who answer the callsidentify themselves as part of the groups but are paid by Schering,according to officials at Convergys Corp., the telemarketing company thathandles the calls in Utah.Schering spokesman Consalvo said his company did not pay for the lines orwrite the scripts that operators used. Such an arrangement could run afoulof FDA rules, he said. So the Hep C Connection, a nonprofit group inDenver funded by Schering, pays the bills at Convergys, he said.Not so, said Convergys spokesman Pratt. "It belongs to Schering 100percent," he said of the information collected by the operators. "Ourcontract is with Schering-Plough." Longley, a Shandwick senior vice president, said her company and itsconsultants have worked hard to "go out and build the infrastructure" ofan "information, education and awareness network."Members listed on the coalitions' documents include government and privatepublic-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, shesaid, but that hasn't happened yet. Schering would remain a member, shesaid.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 onpeople than a costly advertising campaign. She denied intentionallydeceiving anyone. Some participants say it is rarely clear who is behind the efforts,however. Learned, a public-health educator in New York, said he was ready tovolunteer after receiving a letter signed by "Diane , New YorkState Hepatitis C Coalition." As it happens, actually works forShandwick."When I got these letters, I bought it," Learned said. He becamesuspicious when he noticed details, such as out-of-town telephone numbersfor the organizers, that seemed inconsistent with a local grass-rootsgroup. "I felt totally manipulated," he said. "It went against everythingI 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 topress for a news story about the urgency of the problem.But Riegle didn't mention to the News reporter that he is deputy chairmanof Shandwick. He said in a recent interview that he didn't think it wasnecessary because he was volunteering for the group and "this is a medicalissue I happen to believe in.""I don't see who's being harmed," he said. "I went along on a pro bonobasis. . . . I was there on my own behalf."In Massachusetts, a news release directed callers to "Kathy Keough ofMassachusetts Hepatitis C Coalition." Keough is a drug industry consultanthired by Shandwick to run the group. She was not familiar with details ofthe press release, she said, because it was written by Shandwick officialsin Minneapolis. Gish, a physician and member of the California coalition who saidhe has received grants from Schering, said the drugmaker should be praisedfor 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 NewEngland Journal of Medicine, worries about the effect the coalitions couldhave on people's faith in public-health campaigns. "It looks balanced. Buthow do you know?" Angell said.Schering's role "underscores for me the fact that drug companies cannot bein education," she said. "They can't because it's a conflict. Theirprimary mission is to increase the bottom line for shareholders."Alfred De, director of communicable-disease control at theMassachusetts Department of Public Health, said the coalitions are raisingpublic awareness of hepatitis C. But he said he's "somewhat concerned"about Schering's role."There's a fine line," said De, who was asked to join his state'scoalition but declined. "It's an unusual way of marketing."© 2000 The Washington Post Company ****************************************Pat Transplant Fundhttp://hepatitis-central.com/patdavis.html**************************************** The Rules Have Changed...Get Paid to Surf the Web! <A HREF="http://www.alladvantage.com/home.asp?refid=FVG-196">http://www.alladvantage.com/go.asp?refid=FVG-196</A>

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-----Original Message-----From: Demastus@... [mailto:Demastus@...]Sent: Wednesday, September 13, 2000 12:39 PMHepCegroupsSubject: [HepC] HEP C INFO: Grass Roots Seeded by Drugmaker

HEP C INFO - http://hepatitis-central.comGrass Roots Seeded by Drugmaker By O'Harrow Jr.Washington Post Staff WriterTuesday , September 12, 2000 ; A01 Showing all the signs of a thriving grass-roots movement, a host of newhealth-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 havevolunteered for the hepatitis C coalitions in 11 states. Membersdistribute thick information packets to educate the public about what theyterm the "silent killer" and the "millennium epidemic." Organizers havebegun pressing state legislators to spend more to fight the disease, whichattacks the liver and affects about 4 million Americans."Collectively we can have a powerful impact in providing educationregarding Hepatitis C," said a recruitment letter from the group in NewYork.But contrary to appearances, these coalitions are not spontaneousgatherings of concerned citizens. They are instead a key part of acarefully orchestrated marketing campaign funded by Schering-Plough Corp.to sell the primary therapy for hepatitis C, Rebetron, which costs $18,000a year.The first coalition was started in Minnesota in late 1997 by aSchering-paid public relations executive, even as the drug was awaitingapproval for sale.The coalitions' toll-free phone numbers are paid for by the drugmaker.Several coalition officials, including former senator W. Riegle Jr.(D-Mich.), are on the payroll of Shandwick International, the publicrelations firm Schering hired to run the effort. And, in a practice thatmay violate Food and Drug Administration rules, Shandwick helped preparescripts for the 800-number operators and educational materials sent out topatients.The drugmaker's campaign offers a vivid look at a public relations tacticgaining currency in corporate America: The use of "AstroTurf," or"grass-tops," groups posing as authentic local organizations to promote aproduct or political aim."What they're doing is typical of the PR industry, but [something] we arenever supposed to notice or see," said Stauber of the Center forMedia & 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 peopleabout hepatitis C. But some say the Schering-funded coalitions raisetroubling conflict-of-interest issues."It's ethically problematic when a company creates entities but then triesto pass them off as authentic and spontaneous grass-roots organizations,"said Murray, president of the Hastings Center, a nonprofit groupthat examines medical ethics. "What bothers me is the deceptiveness."It bothers Allan Rosenfield, too. The dean of Columbia University'sMailman School of Public Health, Rosenfield said he was under theimpression when he joined the board of the New York coalition thatSchering had provided only a small grant. But when told the extent ofSchering's involvement, he said, "It just goes beyond what I think isappropriate."He said he intends to resign from the group. "I don't like what I'velearned," he said. "Sometimes marketing people in these companies don'tuse good sense."Schering-Plough spokesman Consalvo defends the company's actions.The aim, he said, is to educate people about an insidious and little-knownblood-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 thecompany's marketing branch, not its charitable arm. He wouldn't say howmuch has been spent.Sales of Rebetron, a combination medicine containing both ribavirin andinterferon, 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 somecoalitions cite Schering, in small print and on some documents, asproviding an "educational grant" or an "unrestricted educational grant."The company also is listed among scores of other groups as a member of thecoalitions.Late last month, however, in response to questions from The WashingtonPost, a Shandwick official acknowledged that the phrase "educationalgrant" was misleading. Shandwick issued a letter to all coalitionspromising to better inform people of the company's role. It said that "allHepatitis C Coalition communications such as invitation letters and pressmaterials will contain the phrase 'Supported by seed funding fromSchering-Plough Corporation' to alleviate any potential concerns aboutdisclosure." W. Abrams, director of the FDA's division of drug marketing,advertising and communications, said his agency generally does notinterfere with "unrestricted educational grants" that companies make topromote good public health awareness."We would, however, become concerned if a drug company controlled orinfluenced the content of information disseminated by the seeminglyindependent organization," he said. He noted that he wasn't commentingdirectly on Schering's involvement in the coalitions.Rebetron is not supposed to be named in educational materials, Consalvosaid, and it did not appear to be. The company knows its product doesn'thave to be mentioned because it is considered the "gold standard"treatment that the vast majority of doctors would prescribe, heacknowledged.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, accordingto the Centers for Disease Control and Prevention. The disease can laydormant for years before damaging the liver.People at risk include users of injection drugs, people who have hadnumerous unprotected sexual contacts and those who received bloodtransfusions before 1992. The number of new infections has droppeddramatically in recent years, according to the CDC, but the number ofpeople expected to suffer liver damage or need transplants is expected toincrease.In July, to underscore the challenge ahead, U.S. Surgeon General Satcher asked Congress to distribute a letter to constituents about thedangers of hepatitis C.While Schering says it is attempting to meet that challenge with thecoalitions, the groups are also part of a broader Schering effort topromote sales of Rebetron.Shandwick works closely with the American Liver Foundation, a nonprofitgroup that has received about $2.5 million over the past five years fromSchering, according to federal tax records and ALF officials. Thatincludes a pledge of $50,000 to the ALF's New York chapter to pay for afull-time staff person to work with Shandwick.Those donations helped the ALF to grow from two full-time staff members inone office to 30 full-time employees in 20 offices around the country,foundation officials said. Donations from Schering last year accounted formore than 12 percent of the group's budget, they added.The company also has paid more than $400,000 since 1997 to a Washingtonlobbying firm that has pressed Congress to ensure that veterans withhepatitis C are covered for treatment, according to a database of lobbyrecords maintained by the Center for Responsive Politics.That firm, Health Policy Analysts, has worked closely with Reps. Victor F.Snyder (D-Ark.) and Shays (R-Conn.), both of whom have heldhearings 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 WorkersSafety Foundation in Atlanta in 1998. The foundation sponsored aconference last month about the accidental exposure of health-care workersto hepatitis C.The center of Schering's coalition effort is the Shandwick office inMinneapolis. Portraying themselves in letters and other documents ascoalition insiders, public relations specialists there have builtdatabases of potential volunteers, trained patients how to discuss theirailment with the media and packaged educational materials for use acrossthe country.Patients and others seeking more information are told to call toll-freenumbers assigned to the state coalitions. Operators who answer the callsidentify themselves as part of the groups but are paid by Schering,according to officials at Convergys Corp., the telemarketing company thathandles the calls in Utah.Schering spokesman Consalvo said his company did not pay for the lines orwrite the scripts that operators used. Such an arrangement could run afoulof FDA rules, he said. So the Hep C Connection, a nonprofit group inDenver funded by Schering, pays the bills at Convergys, he said.Not so, said Convergys spokesman Pratt. "It belongs to Schering 100percent," he said of the information collected by the operators. "Ourcontract is with Schering-Plough." Longley, a Shandwick senior vice president, said her company and itsconsultants have worked hard to "go out and build the infrastructure" ofan "information, education and awareness network."Members listed on the coalitions' documents include government and privatepublic-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, shesaid, but that hasn't happened yet. Schering would remain a member, shesaid.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 onpeople than a costly advertising campaign. She denied intentionallydeceiving anyone. Some participants say it is rarely clear who is behind the efforts,however. Learned, a public-health educator in New York, said he was ready tovolunteer after receiving a letter signed by "Diane , New YorkState Hepatitis C Coalition." As it happens, actually works forShandwick."When I got these letters, I bought it," Learned said. He becamesuspicious when he noticed details, such as out-of-town telephone numbersfor the organizers, that seemed inconsistent with a local grass-rootsgroup. "I felt totally manipulated," he said. "It went against everythingI 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 topress for a news story about the urgency of the problem.But Riegle didn't mention to the News reporter that he is deputy chairmanof Shandwick. He said in a recent interview that he didn't think it wasnecessary because he was volunteering for the group and "this is a medicalissue I happen to believe in.""I don't see who's being harmed," he said. "I went along on a pro bonobasis. . . . I was there on my own behalf."In Massachusetts, a news release directed callers to "Kathy Keough ofMassachusetts Hepatitis C Coalition." Keough is a drug industry consultanthired by Shandwick to run the group. She was not familiar with details ofthe press release, she said, because it was written by Shandwick officialsin Minneapolis. Gish, a physician and member of the California coalition who saidhe has received grants from Schering, said the drugmaker should be praisedfor 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 NewEngland Journal of Medicine, worries about the effect the coalitions couldhave on people's faith in public-health campaigns. "It looks balanced. Buthow do you know?" Angell said.Schering's role "underscores for me the fact that drug companies cannot bein education," she said. "They can't because it's a conflict. Theirprimary mission is to increase the bottom line for shareholders."Alfred De, director of communicable-disease control at theMassachusetts Department of Public Health, said the coalitions are raisingpublic awareness of hepatitis C. But he said he's "somewhat concerned"about Schering's role."There's a fine line," said De, who was asked to join his state'scoalition but declined. "It's an unusual way of marketing."© 2000 The Washington Post Company ****************************************Pat Transplant Fundhttp://hepatitis-central.com/patdavis.html**************************************** The Rules Have Changed...Get Paid to Surf the Web! <A HREF="http://www.alladvantage.com/home.asp?refid=FVG-196">http://www.alladvantage.com/go.asp?refid=FVG-196</A>

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-----Original Message-----From: Demastus@... [mailto:Demastus@...]Sent: Wednesday, September 13, 2000 12:39 PMHepCegroupsSubject: [HepC] HEP C INFO: Grass Roots Seeded by Drugmaker

HEP C INFO - http://hepatitis-central.comGrass Roots Seeded by Drugmaker By O'Harrow Jr.Washington Post Staff WriterTuesday , September 12, 2000 ; A01 Showing all the signs of a thriving grass-roots movement, a host of newhealth-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 havevolunteered for the hepatitis C coalitions in 11 states. Membersdistribute thick information packets to educate the public about what theyterm the "silent killer" and the "millennium epidemic." Organizers havebegun pressing state legislators to spend more to fight the disease, whichattacks the liver and affects about 4 million Americans."Collectively we can have a powerful impact in providing educationregarding Hepatitis C," said a recruitment letter from the group in NewYork.But contrary to appearances, these coalitions are not spontaneousgatherings of concerned citizens. They are instead a key part of acarefully orchestrated marketing campaign funded by Schering-Plough Corp.to sell the primary therapy for hepatitis C, Rebetron, which costs $18,000a year.The first coalition was started in Minnesota in late 1997 by aSchering-paid public relations executive, even as the drug was awaitingapproval for sale.The coalitions' toll-free phone numbers are paid for by the drugmaker.Several coalition officials, including former senator W. Riegle Jr.(D-Mich.), are on the payroll of Shandwick International, the publicrelations firm Schering hired to run the effort. And, in a practice thatmay violate Food and Drug Administration rules, Shandwick helped preparescripts for the 800-number operators and educational materials sent out topatients.The drugmaker's campaign offers a vivid look at a public relations tacticgaining currency in corporate America: The use of "AstroTurf," or"grass-tops," groups posing as authentic local organizations to promote aproduct or political aim."What they're doing is typical of the PR industry, but [something] we arenever supposed to notice or see," said Stauber of the Center forMedia & 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 peopleabout hepatitis C. But some say the Schering-funded coalitions raisetroubling conflict-of-interest issues."It's ethically problematic when a company creates entities but then triesto pass them off as authentic and spontaneous grass-roots organizations,"said Murray, president of the Hastings Center, a nonprofit groupthat examines medical ethics. "What bothers me is the deceptiveness."It bothers Allan Rosenfield, too. The dean of Columbia University'sMailman School of Public Health, Rosenfield said he was under theimpression when he joined the board of the New York coalition thatSchering had provided only a small grant. But when told the extent ofSchering's involvement, he said, "It just goes beyond what I think isappropriate."He said he intends to resign from the group. "I don't like what I'velearned," he said. "Sometimes marketing people in these companies don'tuse good sense."Schering-Plough spokesman Consalvo defends the company's actions.The aim, he said, is to educate people about an insidious and little-knownblood-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 thecompany's marketing branch, not its charitable arm. He wouldn't say howmuch has been spent.Sales of Rebetron, a combination medicine containing both ribavirin andinterferon, 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 somecoalitions cite Schering, in small print and on some documents, asproviding an "educational grant" or an "unrestricted educational grant."The company also is listed among scores of other groups as a member of thecoalitions.Late last month, however, in response to questions from The WashingtonPost, a Shandwick official acknowledged that the phrase "educationalgrant" was misleading. Shandwick issued a letter to all coalitionspromising to better inform people of the company's role. It said that "allHepatitis C Coalition communications such as invitation letters and pressmaterials will contain the phrase 'Supported by seed funding fromSchering-Plough Corporation' to alleviate any potential concerns aboutdisclosure." W. Abrams, director of the FDA's division of drug marketing,advertising and communications, said his agency generally does notinterfere with "unrestricted educational grants" that companies make topromote good public health awareness."We would, however, become concerned if a drug company controlled orinfluenced the content of information disseminated by the seeminglyindependent organization," he said. He noted that he wasn't commentingdirectly on Schering's involvement in the coalitions.Rebetron is not supposed to be named in educational materials, Consalvosaid, and it did not appear to be. The company knows its product doesn'thave to be mentioned because it is considered the "gold standard"treatment that the vast majority of doctors would prescribe, heacknowledged.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, accordingto the Centers for Disease Control and Prevention. The disease can laydormant for years before damaging the liver.People at risk include users of injection drugs, people who have hadnumerous unprotected sexual contacts and those who received bloodtransfusions before 1992. The number of new infections has droppeddramatically in recent years, according to the CDC, but the number ofpeople expected to suffer liver damage or need transplants is expected toincrease.In July, to underscore the challenge ahead, U.S. Surgeon General Satcher asked Congress to distribute a letter to constituents about thedangers of hepatitis C.While Schering says it is attempting to meet that challenge with thecoalitions, the groups are also part of a broader Schering effort topromote sales of Rebetron.Shandwick works closely with the American Liver Foundation, a nonprofitgroup that has received about $2.5 million over the past five years fromSchering, according to federal tax records and ALF officials. Thatincludes a pledge of $50,000 to the ALF's New York chapter to pay for afull-time staff person to work with Shandwick.Those donations helped the ALF to grow from two full-time staff members inone office to 30 full-time employees in 20 offices around the country,foundation officials said. Donations from Schering last year accounted formore than 12 percent of the group's budget, they added.The company also has paid more than $400,000 since 1997 to a Washingtonlobbying firm that has pressed Congress to ensure that veterans withhepatitis C are covered for treatment, according to a database of lobbyrecords maintained by the Center for Responsive Politics.That firm, Health Policy Analysts, has worked closely with Reps. Victor F.Snyder (D-Ark.) and Shays (R-Conn.), both of whom have heldhearings 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 WorkersSafety Foundation in Atlanta in 1998. The foundation sponsored aconference last month about the accidental exposure of health-care workersto hepatitis C.The center of Schering's coalition effort is the Shandwick office inMinneapolis. Portraying themselves in letters and other documents ascoalition insiders, public relations specialists there have builtdatabases of potential volunteers, trained patients how to discuss theirailment with the media and packaged educational materials for use acrossthe country.Patients and others seeking more information are told to call toll-freenumbers assigned to the state coalitions. Operators who answer the callsidentify themselves as part of the groups but are paid by Schering,according to officials at Convergys Corp., the telemarketing company thathandles the calls in Utah.Schering spokesman Consalvo said his company did not pay for the lines orwrite the scripts that operators used. Such an arrangement could run afoulof FDA rules, he said. So the Hep C Connection, a nonprofit group inDenver funded by Schering, pays the bills at Convergys, he said.Not so, said Convergys spokesman Pratt. "It belongs to Schering 100percent," he said of the information collected by the operators. "Ourcontract is with Schering-Plough." Longley, a Shandwick senior vice president, said her company and itsconsultants have worked hard to "go out and build the infrastructure" ofan "information, education and awareness network."Members listed on the coalitions' documents include government and privatepublic-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, shesaid, but that hasn't happened yet. Schering would remain a member, shesaid.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 onpeople than a costly advertising campaign. She denied intentionallydeceiving anyone. Some participants say it is rarely clear who is behind the efforts,however. Learned, a public-health educator in New York, said he was ready tovolunteer after receiving a letter signed by "Diane , New YorkState Hepatitis C Coalition." As it happens, actually works forShandwick."When I got these letters, I bought it," Learned said. He becamesuspicious when he noticed details, such as out-of-town telephone numbersfor the organizers, that seemed inconsistent with a local grass-rootsgroup. "I felt totally manipulated," he said. "It went against everythingI 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 topress for a news story about the urgency of the problem.But Riegle didn't mention to the News reporter that he is deputy chairmanof Shandwick. He said in a recent interview that he didn't think it wasnecessary because he was volunteering for the group and "this is a medicalissue I happen to believe in.""I don't see who's being harmed," he said. "I went along on a pro bonobasis. . . . I was there on my own behalf."In Massachusetts, a news release directed callers to "Kathy Keough ofMassachusetts Hepatitis C Coalition." Keough is a drug industry consultanthired by Shandwick to run the group. She was not familiar with details ofthe press release, she said, because it was written by Shandwick officialsin Minneapolis. Gish, a physician and member of the California coalition who saidhe has received grants from Schering, said the drugmaker should be praisedfor 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 NewEngland Journal of Medicine, worries about the effect the coalitions couldhave on people's faith in public-health campaigns. "It looks balanced. Buthow do you know?" Angell said.Schering's role "underscores for me the fact that drug companies cannot bein education," she said. "They can't because it's a conflict. Theirprimary mission is to increase the bottom line for shareholders."Alfred De, director of communicable-disease control at theMassachusetts Department of Public Health, said the coalitions are raisingpublic awareness of hepatitis C. But he said he's "somewhat concerned"about Schering's role."There's a fine line," said De, who was asked to join his state'scoalition but declined. "It's an unusual way of marketing."© 2000 The Washington Post Company ****************************************Pat Transplant Fundhttp://hepatitis-central.com/patdavis.html**************************************** The Rules Have Changed...Get Paid to Surf the Web! <A HREF="http://www.alladvantage.com/home.asp?refid=FVG-196">http://www.alladvantage.com/go.asp?refid=FVG-196</A>

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-----Original Message-----From: Demastus@... [mailto:Demastus@...]Sent: Wednesday, September 13, 2000 12:39 PMHepCegroupsSubject: [HepC] HEP C INFO: Grass Roots Seeded by Drugmaker

HEP C INFO - http://hepatitis-central.comGrass Roots Seeded by Drugmaker By O'Harrow Jr.Washington Post Staff WriterTuesday , September 12, 2000 ; A01 Showing all the signs of a thriving grass-roots movement, a host of newhealth-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 havevolunteered for the hepatitis C coalitions in 11 states. Membersdistribute thick information packets to educate the public about what theyterm the "silent killer" and the "millennium epidemic." Organizers havebegun pressing state legislators to spend more to fight the disease, whichattacks the liver and affects about 4 million Americans."Collectively we can have a powerful impact in providing educationregarding Hepatitis C," said a recruitment letter from the group in NewYork.But contrary to appearances, these coalitions are not spontaneousgatherings of concerned citizens. They are instead a key part of acarefully orchestrated marketing campaign funded by Schering-Plough Corp.to sell the primary therapy for hepatitis C, Rebetron, which costs $18,000a year.The first coalition was started in Minnesota in late 1997 by aSchering-paid public relations executive, even as the drug was awaitingapproval for sale.The coalitions' toll-free phone numbers are paid for by the drugmaker.Several coalition officials, including former senator W. Riegle Jr.(D-Mich.), are on the payroll of Shandwick International, the publicrelations firm Schering hired to run the effort. And, in a practice thatmay violate Food and Drug Administration rules, Shandwick helped preparescripts for the 800-number operators and educational materials sent out topatients.The drugmaker's campaign offers a vivid look at a public relations tacticgaining currency in corporate America: The use of "AstroTurf," or"grass-tops," groups posing as authentic local organizations to promote aproduct or political aim."What they're doing is typical of the PR industry, but [something] we arenever supposed to notice or see," said Stauber of the Center forMedia & 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 peopleabout hepatitis C. But some say the Schering-funded coalitions raisetroubling conflict-of-interest issues."It's ethically problematic when a company creates entities but then triesto pass them off as authentic and spontaneous grass-roots organizations,"said Murray, president of the Hastings Center, a nonprofit groupthat examines medical ethics. "What bothers me is the deceptiveness."It bothers Allan Rosenfield, too. The dean of Columbia University'sMailman School of Public Health, Rosenfield said he was under theimpression when he joined the board of the New York coalition thatSchering had provided only a small grant. But when told the extent ofSchering's involvement, he said, "It just goes beyond what I think isappropriate."He said he intends to resign from the group. "I don't like what I'velearned," he said. "Sometimes marketing people in these companies don'tuse good sense."Schering-Plough spokesman Consalvo defends the company's actions.The aim, he said, is to educate people about an insidious and little-knownblood-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 thecompany's marketing branch, not its charitable arm. He wouldn't say howmuch has been spent.Sales of Rebetron, a combination medicine containing both ribavirin andinterferon, 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 somecoalitions cite Schering, in small print and on some documents, asproviding an "educational grant" or an "unrestricted educational grant."The company also is listed among scores of other groups as a member of thecoalitions.Late last month, however, in response to questions from The WashingtonPost, a Shandwick official acknowledged that the phrase "educationalgrant" was misleading. Shandwick issued a letter to all coalitionspromising to better inform people of the company's role. It said that "allHepatitis C Coalition communications such as invitation letters and pressmaterials will contain the phrase 'Supported by seed funding fromSchering-Plough Corporation' to alleviate any potential concerns aboutdisclosure." W. Abrams, director of the FDA's division of drug marketing,advertising and communications, said his agency generally does notinterfere with "unrestricted educational grants" that companies make topromote good public health awareness."We would, however, become concerned if a drug company controlled orinfluenced the content of information disseminated by the seeminglyindependent organization," he said. He noted that he wasn't commentingdirectly on Schering's involvement in the coalitions.Rebetron is not supposed to be named in educational materials, Consalvosaid, and it did not appear to be. The company knows its product doesn'thave to be mentioned because it is considered the "gold standard"treatment that the vast majority of doctors would prescribe, heacknowledged.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, accordingto the Centers for Disease Control and Prevention. The disease can laydormant for years before damaging the liver.People at risk include users of injection drugs, people who have hadnumerous unprotected sexual contacts and those who received bloodtransfusions before 1992. The number of new infections has droppeddramatically in recent years, according to the CDC, but the number ofpeople expected to suffer liver damage or need transplants is expected toincrease.In July, to underscore the challenge ahead, U.S. Surgeon General Satcher asked Congress to distribute a letter to constituents about thedangers of hepatitis C.While Schering says it is attempting to meet that challenge with thecoalitions, the groups are also part of a broader Schering effort topromote sales of Rebetron.Shandwick works closely with the American Liver Foundation, a nonprofitgroup that has received about $2.5 million over the past five years fromSchering, according to federal tax records and ALF officials. Thatincludes a pledge of $50,000 to the ALF's New York chapter to pay for afull-time staff person to work with Shandwick.Those donations helped the ALF to grow from two full-time staff members inone office to 30 full-time employees in 20 offices around the country,foundation officials said. Donations from Schering last year accounted formore than 12 percent of the group's budget, they added.The company also has paid more than $400,000 since 1997 to a Washingtonlobbying firm that has pressed Congress to ensure that veterans withhepatitis C are covered for treatment, according to a database of lobbyrecords maintained by the Center for Responsive Politics.That firm, Health Policy Analysts, has worked closely with Reps. Victor F.Snyder (D-Ark.) and Shays (R-Conn.), both of whom have heldhearings 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 WorkersSafety Foundation in Atlanta in 1998. The foundation sponsored aconference last month about the accidental exposure of health-care workersto hepatitis C.The center of Schering's coalition effort is the Shandwick office inMinneapolis. Portraying themselves in letters and other documents ascoalition insiders, public relations specialists there have builtdatabases of potential volunteers, trained patients how to discuss theirailment with the media and packaged educational materials for use acrossthe country.Patients and others seeking more information are told to call toll-freenumbers assigned to the state coalitions. Operators who answer the callsidentify themselves as part of the groups but are paid by Schering,according to officials at Convergys Corp., the telemarketing company thathandles the calls in Utah.Schering spokesman Consalvo said his company did not pay for the lines orwrite the scripts that operators used. Such an arrangement could run afoulof FDA rules, he said. So the Hep C Connection, a nonprofit group inDenver funded by Schering, pays the bills at Convergys, he said.Not so, said Convergys spokesman Pratt. "It belongs to Schering 100percent," he said of the information collected by the operators. "Ourcontract is with Schering-Plough." Longley, a Shandwick senior vice president, said her company and itsconsultants have worked hard to "go out and build the infrastructure" ofan "information, education and awareness network."Members listed on the coalitions' documents include government and privatepublic-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, shesaid, but that hasn't happened yet. Schering would remain a member, shesaid.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 onpeople than a costly advertising campaign. She denied intentionallydeceiving anyone. Some participants say it is rarely clear who is behind the efforts,however. Learned, a public-health educator in New York, said he was ready tovolunteer after receiving a letter signed by "Diane , New YorkState Hepatitis C Coalition." As it happens, actually works forShandwick."When I got these letters, I bought it," Learned said. He becamesuspicious when he noticed details, such as out-of-town telephone numbersfor the organizers, that seemed inconsistent with a local grass-rootsgroup. "I felt totally manipulated," he said. "It went against everythingI 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 topress for a news story about the urgency of the problem.But Riegle didn't mention to the News reporter that he is deputy chairmanof Shandwick. He said in a recent interview that he didn't think it wasnecessary because he was volunteering for the group and "this is a medicalissue I happen to believe in.""I don't see who's being harmed," he said. "I went along on a pro bonobasis. . . . I was there on my own behalf."In Massachusetts, a news release directed callers to "Kathy Keough ofMassachusetts Hepatitis C Coalition." Keough is a drug industry consultanthired by Shandwick to run the group. She was not familiar with details ofthe press release, she said, because it was written by Shandwick officialsin Minneapolis. Gish, a physician and member of the California coalition who saidhe has received grants from Schering, said the drugmaker should be praisedfor 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 NewEngland Journal of Medicine, worries about the effect the coalitions couldhave on people's faith in public-health campaigns. "It looks balanced. Buthow do you know?" Angell said.Schering's role "underscores for me the fact that drug companies cannot bein education," she said. "They can't because it's a conflict. Theirprimary mission is to increase the bottom line for shareholders."Alfred De, director of communicable-disease control at theMassachusetts Department of Public Health, said the coalitions are raisingpublic awareness of hepatitis C. But he said he's "somewhat concerned"about Schering's role."There's a fine line," said De, who was asked to join his state'scoalition but declined. "It's an unusual way of marketing."© 2000 The Washington Post Company ****************************************Pat Transplant Fundhttp://hepatitis-central.com/patdavis.html**************************************** The Rules Have Changed...Get Paid to Surf the Web! <A HREF="http://www.alladvantage.com/home.asp?refid=FVG-196">http://www.alladvantage.com/go.asp?refid=FVG-196</A>