By Sharon Batt
I've been committed to advocacy work in breast cancer since 1989 because I realized, soon after my diagnosis, that cancer policies were controlled by vested interests. I thought that grass roots community groups were a way to change that. I thought community-based groups were a democratic imperative. I now realize I was very naïve. Today we have breast cancer groups that are controlled by vested interests. Our community-based groups may be necessary to democracy, but our breast cancer groups also threaten democracy.
At the centre of this paradox is the question of funding from the pharmaceutical industry.
If we want our groups to serve the democratic ideal of promoting health policies in the public interest, we need to understand how the pharmaceutical industry operates. The pharmaceutical industry is wooing breast cancer groups. Funding for advocacy is difficult to find. If a pharmaceutical company offers you funds to enable you to do exactly what you want to do, you may be tempted.
Today I want to present reasons why we need to resist such funding. I will talk about a policy lobby that groups in Canada have been involved with, and how pharma funding may have influenced this lobby. My purpose is to expose the down side of these so-called partnerships in the hope that more groups will consciously choose independence from drug company funding.
The Health Policy Environment
Drugs are highly regulated products: we regulate which drugs are approved for use; once approved, we regulate who has access; unless we live in the U. S., we regulate their price. We regulate the advertising of prescription drugs. All of this regulation is for good reason. Drugs are fundamentally different from other consumer products. They are a necessary part of our arsenal for treating disease. At the same time, prescription drug can have powerful adverse effects. Even when used exactly as intended, effects can be fatal.
Governments today are faced with drug manufacturer lobbies designed to relax existing restrictions so that drug companies can bring their products to market faster, fight price controls and increase sales. Drug companies are seeking strategic allies in these battles. This is why patient advocacy associations are desirable "pharma partners."
The term "pharma partners" is used in the pharmaceutical community to describe community groups and other agencies that work in partnership with the industry. A partnership implies equality. The idea of a partnership between a grass roots community organization and the most profitable industry in the globe is patently absurd. But the idea is out there and, agree with it or not, we need to recognize it.
Pharma partnerships are ubiquitous in the cancer field. Cancer researchers have pharma partners. Cancer fundraising groups have pharma partners. This conference has pharma partners. The Canadian Breast Cancer Network a group that I helped found " now has a pharma partner. Last fall, at a luncheon address at a Canadian Pharmaceutical Sales and Marketing Summit in Toronto one speaker, a prominent Canadian health advocate, talked about "Patient Advocates: Pharma's Newest Partners." This is someone who clearly believes in pharma partnerships.
One PR strategy is the "Astroturf" group, a group created or co-opted by the pharma company but which is perceived as grass roots while lobbying for corporate interests. Astroturf groups are designed to create public support for a point of view. The activists recruited may be uninformed or they may be recruited by deceptive means.
If advocates want to be forearmed when the pharmaceutical cheque writers come to the door, the more we know about the public relations industry, the better. I highly recommend the books Toxic Sludge is Good for You and Trust Us, We're Experts! in which the authors deconstruct the public relations industry, which, unlike advertising, is meant to be invisible.¹
Grass Roots Groups and Prescription Drug Ads Aimed at Consumers
Pharmaceutical companies want the right to advertise prescription drugs directly to the public. Such ads are currently illegal in every country in the world except the U.S.A. and New Zealand. I've been part of a lobby that opposes legalizing Direct to Consumer Advertising (DTCA) in Canada. Our coalition, Women and Health Protection, is linked to sister groups in the U.S. through Prevention First (BCAM is a member of this coalition and is represented by Laura Shea). All of our members agree that a ban on ads for pharmaceutical drugs serves the public interest.
I follow the DTCA debate closely, so last November when l saw a notice about a forum in Toronto on direct-to-consumer advertising, I checked the list of participants. The panel was heavily weighted with pharmaceutical representatives, and it seemed clear from the media advisory that the position advocated would be the industry one: a call for legalized DTCA.
I was surprised to see that two members of the Canadian Breast Cancer Network (CBCN) were forum members since I was not aware that the CBCN had taken a position on DTCA. It turned out it hadn't. The CBCN board had never discussed this issue and most CBCN members I spoke to were not aware of the forum, even though two members of their board were listed as speakers, and identified in the media advisory as representatives of the CBCN.
The connection between the forum and the CBCN is a group called the Consumer Advocare Network. Durhane Wong-Reiger, who is on record as supporting legal DTCA, heads the Consumer Advocare Network. Members of Advocare are drawn from different patient groups, of which the CBCN is one. Through the Advocare Network, Wong-Reiger brings health advocates together to discuss key pharmaceutical policy issues, like DTCA. Based on discussions with these people, and with people from the pharmaceutical industry, she prepared a 19-page brief to Health Cana-da calling on the government to legalize DTCA.
Now, if someone from the board of a consumer group like the CBCN joins Advocare and, through Advo-care, publicly endorses a controver-sial position on a drug policy like DTCA, the name of the organization gives weight to their endorsement of the policy position. But how demo-cratic is that, if the organization has never formed a position on that issue? How are these people chosen in the first place? Who funds Advocare? As a citizen concerned about pharmaceutical drug policies, I worry when I see a report calling on Health Canada to change a law designed to protect consumers, when the voices behind that paper are heavily repre-sented by the pharmaceutical industry and from a consumer network that smells so strongly of Astroturf.
I once believed community-based groups would be the vehicle to confront professional interests. However, in an era when patient advocates are pharma partners, the public can no longer assume that advocacy groups have the public interest at heart. Unless an organization has foresworn corporate money, we can't be assured of its independence. And that is not in the best interests of our health, or in the best interest of a just society.
We need change. We need advocacy. Social change is hard work, and no one is going to pay us to do it.
1. Stauber, John and Sheldon Rampton, Toxic sludge is good for you! Maine: Common Courage Press, 1995, and Trust Us, We're Experts!, NY: Penguin Putnam, 2001