From Straight Goods
http://www.straightgoods.com/
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Beware of phony citizens' groups sponsored by drug companies

Patient advocacy groups are often not what they seem

Dateline: Monday, December 01, 2003

by Gordon Guyatt, MD

A newspaper article written by two doctors attacks screening for prostate
cancer, saying that the evidence to support the practice is weak. A little
later, a non- profit group called "Us too! International", which describes
itself as the world's largest "grassroots, independent, patient-focused
charitable organization" speaks out.

"Us too!" tells you that prostate cancer screening saves lives, and accuses
the doctors who wrote the article of "journalist terrorist tactics".

A state government is considering new laws that will limit the prices that
the government pays pharmaceutical companies for prescriptions in publicly
supported programs. A television commercial paid for by an independent
senior citizens group, "60 Plus," tells you that the laws will threaten
your health by limiting your access to the best medicines.

You are sitting at a bus shelter and notice an ad that shows a
dejected-looking man idly playing with a teacup. The ad asks you to
"Imagine Being Allergic to People. You blush, sweat, shake - even find it
hard to breathe. That's what social anxiety disorder feels like." The
poster tells you the Social Anxiety Disorder Coalition, a non-profit
organization, has sponsored the ad.

If non-profit consumers' group involvement made you more concerned about
the criticisms of prostate screening, more worried about the drug
restrictions, and more inclined to think of social anxiety disorder as a
serious problem, you have lots of company. A 1999 investigation found that
advocacy by independent groups influences consumers' perceptions. The
investigation concluded that consumers "place a high level of trust in
nonprofit organizations; prefer products marketed in association with a
nonprofit organization; and believe that products marketed in association
with a nonprofit organization carry an endorsement by the nonprofit
organization."

   Drug company contributions accounted for 95% of the tax-deductible
funding of the lobby group Us Too! International

As it turns out, the non-profit organizations associated with the three
campaigns are neither independent nor objective. Tax documents show that
the non-profit group in the first story, Us Too! International held
$799,012 in net assets at the end of 2000. Drug company contributions
accounted for 95% of the group's tax deductible funding.

Another American seniors' group did not take kindly to "60 Plus," the
non-profit group of the second story, attacking legislation to limit
payments to drug companies. AARP, an organization with 35 million members
aged over 50, was upset about the ad campaigns against legislation that
would increase access to affordable medication. AARP found "60 Plus" had
received $575,000 from pharmaceutical-related firms in 2001.

In the third story, a pharmaceutical company created the non-profit group
for a specific marketing campaign. In 1998, SmithKline, a multinational
drug company, was about to obtain approval for one of their antidepressant
drugs. The specific indication was treatment for "social anxiety disorder"
(SAD). To boost sales, SmithKline decided they needed to promote the
disease as well as the drug.

The company hired a public relations firm, Cohn and Wolfe, to help them.
The PR firm dreamed up the "imagine being allergic to people" ad that never
mentioned SmithKline or their drug. The coalition was no grassroots
alliance of patients, but a creation of Cohn & Wolfe who handled all media
inquiries on behalf of the group. Today, a recording that announces, "This
program has successfully concluded," greets callers to the coalition's hot
line.

The campaign worked well. In the two years preceding the drug's approval,
fewer than 50 stories on SAD had appeared in the popular press. In May,
1999, the month when the drug gained approval, hundreds of stories about
the illness appeared in publications and television news programs.
SmithKline then launched ads showing how the drug could help SAD sufferers
brave dinner parties and public speaking.

   Using patient groups as a tool in campaigns to gain drug approval,
funding, and popularization has become standard industry practice.

Using patient groups as a tool in campaigns to gain drug approval, funding,
and popularization has become standard industry practice. The industry
supports patient groups that range from less well-known psychiatric
conditions like social anxiety disorder or generalized anxiety disorder, to
common conditions such as irritable bowel syndrome, osteoporosis, and
diabetes. They rely on patient groups to supply quotes and compelling human
stories for the media, and to pressure the regulators and politicians in
charge of approval and funding decisions.

Some groups resist the temptation of drug money. Kathleen O'Grady, the
Director of Communications for a non-profit public education group, the
Canadian Women's Health Network, regularly refuses offers from PR firms
representing the pharmaceutical industry. Her refusal preserves her
organization's independence, but at the price of fewer dollars for public
education.

Not many patient groups, however, can resist industry money and the
influence that comes with that money. Pharmaceutical sponsorship has become
so widespread that, unless non-profit organizations tell they that they are
free of industry support, you should assume that the hidden hand of the
industry is influencing their public campaigns. And judge the content with
appropriate skepticism.

Gordon Guyatt MD, FRCPC, lives in Dundas, Ontario. He is an academic
physician at McMaster University's Department of Clinical Epidemiology and
Biostatistics and Department of Medicine.

© Straight Goods, 2000-2003. All Rights Reserved.

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