4 min

Buying good will

Can AIDS activists be friends with drug companies?

The casually-dressed man at the table next to me was scribbling in a notebook. It was an AIDS conference and he looked familiar. Was he a fellow journalist?

Unlike most other participants, he wasn’t wearing a name tag. Then I remembered where I’d seen him before. He’d been huddled in conversation with a prominent AIDS activist at a downtown clinic. It looked like the two of them were personal friends, but the activist told me later that the man was a pharmaceutical company representative. He’d been giving out free tickets to the musical Rent.

That was a couple of years ago, and it’s a fairly mild example of the ways that drug company employees travel among and ingratiate themselves to people involved in AIDS work.

Since then, the pharmaceutical industry has been working steadily to extend its influence over AIDS service organizations, their staff and influential community leaders.

To the drug industry, it makes good business sense. The industry has always spent an enormous amount of money trying to influence health care providers with marketing materials, trips, gifts and research money.

Increasingly, the target is people in AIDS treatment education. Drug companies want to promote sales of their drugs, and AIDS represents a big market. But ASOs and their staff must be careful to guard their integrity and their credibility with their clients.

“We became very alarmed about the things we’ve seen in the past two years,” says Avi Rose, executive director of Project Inform, a non-profit San Francisco AIDS service organization founded in 1985.

According to Project Inform: “The question is just what constitutes legitimate marketing and what is, instead, an inappropriate intrusion into public efforts to educate HIV-positive people, caregivers and the many case managers and treatment advocates hired by AIDS service agencies…. To industry, people in these jobs represent new gateways to a largely untapped market made up of harder to reach populations…. We need to ask where the line is drawn between marketing and education.”

“Treatment education is indeed an important need at this stage of the epidemic,” states a Project Inform document titled The Fine Line Between Education And Marketing. “But there are profound questions about where that information comes from and whose interests it promotes.”

To encourage thoughtful debate, Project Inform developed a series of proposed guidelines for ethical relations between the community and pharmaceutical companies. They were circulated in November through Aegis, a major AIDS e-mail listserve.

“Not everyone will agree with our guidelines, and we want feedback. But people should have guidelines; they should think through under what conditions they will accept money. Most commonly, as far as I’m aware, AIDS agencies don’t have any guidelines at all,” Rose says. He stressed that those agencies which do have guidelines should build in a system of regular review. “Sometimes groups start to make exceptions,” and the guidelines lose their meaning, he says.

Project Inform’s proposed guidelines are good and they are timely.

“If they’re ever implemented in Canada, it will be a major advance,” says Dr Philip Berger, a longtime critic of marketing tactics used by the pharmaceutical industry.

Dr Joel Lexchin, author of The Real Pushers, a critical analysis of the Canadian drug industry, agrees that guidelines are necessary. “Because people will wonder, what is the basis for what you’re doing? Why did you decide to do this, or do that. What prompted your actions?”

The pharmaceutical industry has become a key funder of AIDS organizations, yet to date there has been precious little debate about the ethics of the relationship between the two sides. I am unaware of any parallel Canadian attempt to outline a set of general guidelines for ASOs here.

Project Inform’s first two guiding principles are disclosure and structured communication.

Firstly, the disclosure principle requires that all significant financial relationships between the community service agencies and the pharmaceutical and biotech industries be explicitly stated.

For the record, about half of Project Inform’s budget comes from foundations and industry. However, all of its pharmaceutical company funding is in the form of “unrestricted grants,” which give the organization full control over how money is spent. (As the guidelines note, only the largest or most established agencies routinely have the ability to attract this type of funding, with virtually “no strings attached.”)

The second guiding principle “speaks to the ways that industry seeks to communicate with and influence agency views and practices.”

Increasingly, pharmaceutical companies are hiring community people formerly associated with local AIDS organizations as adjuncts to their marketing staff, Project Inform says. At its worst, hiring people with community backgrounds “becomes a way for industry to put a friendlier face on its proprietary interests and to take inappropriate advantage of individuals and their relationships with the community.”

In an interview, Rose expresses particular concern about this development. Many former community workers who are now drug company employees “have the best of intentions and for the most part see themselves representing the community,” he says. “But their vantage has changed. They are involved in marketing and they have to face that honestly and squarely.”

Project Inform says that companies increasingly target not whole agencies, but individuals within agencies for “in-depth” relationships. More and more “educational” and “consultant” meetings are being held at resorts. Many amount to little more than extended sales promotions in a unique, company controlled environment.

Project Inform suggests agencies establish clear and explicit lines of communication to govern all contact between its personnel and members of the pharmaceutical and biotech industry.

Project Inform’s third guiding principle is the issue of independence and ownership, which I’ll address in the next issue of Xtra, along with the situation at some Canadian ASOs.