This article was first published as "From Patient Activism to Astroturf Marketing"in PR Watch, Volume 10, No. 1, 1st Quarter 2003. It original article was authored by Bob Burton and Andy Rowell and is used here with permission. As with all SourceWatch articles, feel free to edit and revise.
"So what does PR stand for?" asked Nancy Turett, the president and global director of Edelman Health. "It stands for powerful relationships. The heart of PR is third-party credibility," Turett wrote in Pharmaceutical Executive in September 2002.
"Third-party messages are an essential means of communication for validating scientific credibility, for legitimizing products, for building brand and disease awareness, and for building defenses against crises," Turett wrote. "As advocates develop louder voices, pharma companies must forge alliances and win allies."
AIDS and the Rise of Activism Marketing
Until the late 1980s, healthcare PR concentrated on cultivating doctors and wooing government regulators. That began to change in part due to the emergence of AIDS activism. In 1987 the US-based AIDS Coalition to Unleash Power (ACT UP) raised citizen-led health activism to new levels, using civil disobedience protests to embarrass drug companies for profiteering, regulators for slow approval of new drugs and governments for inadequate research funding.
For drug companies, AIDS activism presented both a challenge and a new marketing opportunity. "Our strategy was not to try and reach every AIDS activist . . . So we tried reaching out to a few and have them work as ambassadors," recalls John Doorley, the head of corporate communications at Merck Pharmaceuticals in the early 1990s.
Doorley, now teaching corporate communications at Rutgers University in New Jersey, devised Merck's strategy for managing AIDS activism. He established a corporate advisory committee, took members on plant tours and rewrote clinical trial consent forms. When ACT UP San Francisco members planned to protest against Merck, advisory committee members came to the company's rescue. "They called the guys in San Francisco and said, 'You go to any other company you want to, but not Merck," Doorley recalled in an interview with PR Week.
In the ensuing decade, drug companies realized the potential benefits of investing in patient groups. In January 2000, Urch Publishing, which offers "business intelligence and information for management in biotechnology, pharmaceuticals and chemicals companies," issued an $800-per-copy report titled Patient Groups and the Global Pharmaceutical Industry. "The perception that industry-patient group collaborations can lead to unwelcome publicity is the principal reason holding many potentially fruitful relationships back," wrote Fred Mills, a UK-based former pharmaceutical industry executive. "Despite this, groups are biting the bullet and some of the early efforts at partnerships have been very worthy and mutually beneficial."
Teri Cox from the New Jersey-based Cox Communication Partners expressed similar enthusiasm in a September 2002 issue of Pharma Executive. Industry-patient "partnerships," she wrote, could "influence changes in healthcare policy and regulations to expand patient access to, and coverage for, earlier diagnoses and treatments . . . recruit participants for clinical trials" and "speed the development and approval process for new therapies." Better still, an alliance with a non-profit group can deter inquisitive journalists. "Without such allies, a skeptical journalist may see a company's messages as self-serving and describe them as such to their audiences," Cox wrote.
"There are no better, more credible advocates for maximising access to a therapy than the patients who are going to benefit from it," explained Emmanuella Dekonor and Simon Taylor from the PR firm of GPC International in a guide to working with patient groups that was published in 2002. However, they acknowledged that there would also be "potential areas of conflict" including "price--they will always think it is too high" and "profit--companies should not be making profit out of illness."
Of course, profit is exactly the reason why drug companies seek to foster patient-industry partnerships. Mills says that "disease awareness" campaigns often result in "a large increase in sales." A good example, he says, is "Zeneca, which was responsible for the creation and sponsorship of 'Breast Cancer Awareness Week.' It would be reasonable to assume that the programme also did nothing to harm sales of tamoxifen either!" Now Breast Cancer Awareness Month (BCAM) events every October raise huge amounts of money for breast cancer research.
Some breast cancer activists are wary of industry's embrace. Barbara Brenner, the executive director of Breast Cancer Action, believes drug company sponsorship of breast cancer awareness has skewed the priorities of some groups into researching a medical "cure" and away from real preventative measures--such as reducing environmental exposure to pesticides. "Real prevention . . . means we figure out what is causing illness and we eradicate those causes. You don't hear BCAM saying that," she said.
Brenner points to the dual role of drug companies manufacturing both breast cancer drugs and pesticides as one reason for the silence about non-drug prevention. Aventis, for example, manufactures Bromoxynil for use on genetically modified cotton. Up until October 2000, Zeneca manufactured the pesticide Acetochlor, which generated annual sales of up to $300 million.
Winners and Losers
Partnerships between drug companies and non-profit groups are now touted as "win-win" deals, but the reality is that consumers of drugs have quite a bit to lose. Salli Nathan edited Blood Ties, a book about the experiences of HIV-positive women in Australia. She believes media hype about HIV drugs exaggerated benefits and understated the "really toxic" side effects. "Each new wave of drugs--especially through the mid- to late 1980s and early 1990s--has been greeted with a huge waves of optimism and enthusiasm, with good cause. But then there has been disillusionment and distress when the drugs haven't been the cure that the hype had lead people to expect," she stated.
Drug companies also view partnerships with patient groups as a way to gain a competitive advantage over rivals. Dekonor and Taylor candidly acknowledge that drug companies "may be reluctant" to help partners gain "accelerated access to the next generation of treatments (i.e., in a competitor's pipeline)." When a PR crisis emerges, such as withdrawal of drug approval, companies seek to turn third-party "partners" into corporate shields. A key task in a crisis is to "deploy third parties to advance your cause," explained Maxine Taylor, the director of corporate affairs at Lilly UK. Third parties should be called on, she suggested, "to share the spotlight if possible, or indeed to divert the spotlight of media attention from you."
One possible example of this strategy occurred in July 2002 when the US National Institutes of Health (NIH) announced that it was abandoning its study of the effects of Prempro, Wyeth's market-leading hormone replacement therapy (HRT) drug. NIH had originally planned an eight-year trial of the drug, but it only took five years to accumulate conclusive evidence of increased health damage to women who use the drug over time. The announcement was reported with shock in media outlets around the world, which had long been accustomed to glowing reports of HRT.
Women's health and consumer groups welcomed the decision, but the announcement precipitated a crisis for Wyeth, which had a 70% share of the HRT market and earned $900 million annually from sales of the drug. Its share price plummeted, and plaintiff lawyers filed a class-action lawsuit.
Support, however, came from the Washington, DC-based Society for Women's Health Research (SWHR), which condemned the NIH decision and distributed op-eds and letters to newspapers around the country. Reporting in Washington Monthly, Alicia Mundy noted that Wyeth and other drug companies are represented on the group's corporate advisory board, but details of the group's funding remain obscure. "Our attorney says it is confidential information that we don't distribute," Mundy was told when she inquired.
The SWHR website notes, however, that Wyeth has been a corporate sponsor of its annual fundraising ball at the Washington Ritz-Carlton. In fact, Wyeth underwrote the entire glitzy affair, which promoted Prempro so enthusiastically that one attendee complained it was "like they were doing an ad for Wyeth."
"A Congressional investigation of the money that drug companies give as supposed educational grants has found that the payments are growing rapidly and are sometimes steered by marketing executives to doctors and groups who push unapproved uses of drugs," the New York Times reported in January 2006.
In 2004, 23 drug companies spent $1.47 billion on educational grants, a 20 percent increase from 2003. The U.S. Senate Finance Committee is "seeking more information" from the companies "about their use of educational grants."  Senator Grassley said, "It's hard to see how you could call some of these grants 'educational.'" Companies are only allowed to market drugs for approved uses, though doctors can prescribe drugs for "off-label" uses. Off-label uses may account for up to half of all U.S. prescriptions. The industry group Pharmaceutical Research and Manufacturers of America pointed to its "comprehensive voluntary guidelines ... that are designed to help keep marketing practices ethical." 
Calls for Disclosure
Prevention First, a coalition of independent women's health groups, testified before the US Food and Drug Administration (FDA) in May 2001 about the impact of behind-the-scenes corporate on public discussions of health issues. "The FDA should strengthen its requirement that all those who purport to represent a consumer point of view to the agency disclose whether they receive funding or other assistance from entities with economic interests at stake before they testify before the FDA," it recommended.
Sharon Batt, a Canadian writer who has been involved in breast cancer groups since the early 1990s, believes that the "corrosive" effect of drug company funding means non-profit groups should be required to disclose potential conflicts of interest in all public communications. "Passive disclosure is clearly inadequate, and public disclosure shouldn't be left to chance or personal choice," she said.
In an article for Breast Cancer Action Montreal, Batt also challenges the description of drug company sponsorship of non-profit groups as a "partnership," pointing out that "a partnership implies equality. The idea of a partnership between a grassroots community organization and the most profitable industry in the globe is patently absurd."
Discussions of accepting funding from drug companies, she says, often creates divisions within non-profit groups. "There is also a lot of naivete and denial, just as with doctors and researchers who insist they can take whatever funds they want from drug companies and still do impartial work," she told PR Watch.
- Alexander Cohen, "Surrogates for Their Agenda: How the drug industry uses non-profits to push its interests", Center for Public Integrity, July 7, 2005.
- United States Senate Committee on Finance, "Grassley, Baucus Seek More Details of Drug Company Grant Money to Promote Particular Medicines", Media Release, January 11, 2006.
- Gardiner Harris, "Drug Makers Scrutinized Over Grants", New York Times, January 11, 2006.