by Bob Burton and Andy Rowell

"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."
Wyeth's Women

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."
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.

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