GLOBE & MAIL, Toronto

Thursday, January 4, 2001

ANDRÉ PICARD Barry Stein vividly recalls the moment he went from patient to advocate. He had just gone through a harrowing surgery for colorectal cancer and, in an effort to alleviate the excruciating pain, he had taken a tad too many painkillers. "I was hallucinating and violently ill," he recalled in an interview. "I was on the edge. I thought: 'This is it. I'm going to die.' "But then I had this feeling, this moment of lucidity, and I turned to my wife and said: 'If we get through this, we have to do something.' " Despite six major surgeries in the past five years, Mr. Stein, a prominent corporate lawyer in Montreal, has kept that death-bed promise. Among his efforts, he raised enough money to buy crucial equipment for the Jewish General Hospital. He became president of the fledgling Colorectal Cancer Society of Canada and founded a support group for colon cancer sufferers in Montreal. He also raised money for a just-opened drop-in centre for cancer patients in Montreal. A legal victory he won against the Quebec government led to money for hundreds of people who had to travel outside the country for care. This spring, he organized a conference that gathered the world's leading colorectal cancer experts at McGill University. Making the calls, doing the research and building support groups and institutions all take energy, but especially money. Although Mr. Stein has spent tens of thousands of dollars of his own money on the cause, he and his allies have also raised many times more in the corporate community, including pharmaceutical companies, the main sponsors of all the projects he has on the go. "I know there's a tendency to bash big pharmaceuticals but working with them is not something to be ashamed about at all. On the contrary, I think you have to be up-front about where your money is coming from, and a lot of our money is coming from them," Mr. Stein said. He noted that while colorectal cancer is the second leading cancer killer in Canada, accounting for about 6,500 deaths annually, the groups have been unable to secure any government funding. A Health Canada spokeswoman said it supports numerous groups, in particular those that focus creating a better understanding of a disease and improving the lives of those who suffer from it. "We fund groups according to whether they meet the priorities of the department [Health Canada] and we often fund various initiatives," depending on the organization's focus on education, awareness and support, said Tara Madigan, a spokeswoman for Health Canada. "If a group has a proposal, they put it forward and it is considered on an individual basis." As a new group, the Colorectal Cancer Society does not have a broad base of donors, meaning the patient activists were left with a choice of depending on industry money or curtailing their activities. "The money has to come from somewhere," Mr. Stein said. "And thank God it's coming from these [pharmaceutical] companies because it's not coming from anywhere else." The Colorectal Society of Canada has a budget of about $500,000 a year, with about 70 per cent of the money coming from companies that make chemotherapy and related drugs. Similarly, the three-day conference at McGill cost almost $150,000, with a big drug firmpicking up a large part of the tab. Mr. Stein is acutely aware that these links raise eyebrows and provoke whispered condemnation in some circles. But the suggestion that charitable and non-profit groups that take money from pharmaceutical companies have been co-opted, that people with life-threatening illnesses are mere shills for drug manufacturers, is preposterous, Mr. Stein said. "We do patient advocacy, not pharmaceutical advocacy. These groups exist because we want better patient care and, yes, that includes better drugs. We want to save our lives, not sell drugs." There is no question pharmaceutical firms work actively at what they call "ally development." Denis Morrice, president and CEO of the Arthritis Society of Canada, believes big pharmaceutical companies are getting a bad rap for their support of consumer groups. "A few years ago, the industry was touting this message: 'Knowledge is the Best Medicine.' So we went to them and said: 'Put your money where your mouth is. And, to their credit, they did,' " he said in an interview. The group gets money from a half-dozen companies, all of which make arthritis drugs, but it goes to a broad range of programs, including Web site support, clinical fellowships and conferences. Mr. Morrice points to one popular service the group offers called the arthritis self-management program, where sufferers teach others to better cope with their affliction. The program was threatened when federal cutbacks eliminated funding. The pharmaceutical company Searle bankrolled the program, at a cost of more than $200,000 annually. "That program doesn't sell drugs, it helps people with arthritis. That's the bottom line with us: People with arthritis have to benefit or there won't be a partnership, no matter how much money is offered," Mr. Morrice said. The Arthritis Society, like many charities, has guidelines on accepting corporate money, including a rule that it will not endorse specific products. The Arthritis Society has an annual budget of $30-million, $1.8-million of which comes from pharmaceutical firms, and virtually nothing from government. "We appreciate the money but the truth is we would still be around if we didn't have a penny from the pharmaceutical industry," Mr. Morrice said. Mr. Morrice said the sophistication of the charitable sector is often underestimated. What consumers are looking for increasingly is information and the pharmaceutical industry has recognized that change, becoming far more open and willing to provide health information, Mr. Morrice said. Government, on the other hand, continues to have a patronizing attitude, providing consumers with little ability to manage their own care, he said. As a result, Mr. Morrice said, consumer groups like the Arthritis Society have come to be far more militant about issues like the slow approval of new drugs and reluctance of governments to place new drugs on provincial formularies, which controls access for many consumers, and influences insurance companies as well -- issues that happen to be important to corporations. "I'm sorry, but the government has to get a lot closer to the community, they have to adjust to the reality, instead of trying to dismiss our concerns as advocacy on behalf of the pharmaceutical industry," Mr. Morrice said. Murray Elston, executive director of Canada's Research-Based Pharmaceutical Companies (Rx&D Canada), the association representing brand-name pharmaceutical manufacturers, agreed that corporations have built mutually beneficial relationships with charitable and non-profit groups by listening to their practical concerns. "More than anything else, there are gaps in information that these consumer groups want addressed and we have done our best to meet those needs," he said. In fact, virtually everything sponsored by the pharmaceutical industry is related to communications. Companies pay for Web sites, pamphlets, videos, CD-ROMs, educational forums, and patient-to-patient exchanges. Often, credit for this material is minimal. Rather, the industry takes a broader, longer term view that, ultimately, informed patients will be allies because they will demand the latest treatments and press politicians to get them. "At the end of the day, our focus is to have patients use our products," Mr. Elston said. "But companies have a long-term vision and, I would suggest, so do the consumer groups." Mr. Elston, a former Ontario health minister, noted that governments have been urging consumers to take control of their health, in the hope that this would ultimately bring down costs. But the flip side of the equation, he said, is that if you give consumers more responsibility for their health care, you have to give them more power. "It's nonsense to say that charitable groups are pushovers that will bow to industry demands in exchange for dollars," he said. "People who characterize these associations as naive and unable to make sound decisions don't know what they're talking about," Mr. Elston said. Durhane Wong-Rieger, executive director the Anemia Institute for Research and Education, said the perception that consumer groups are beholden to the industry comes from the United States, where so-called astroturf groups are more common. (Astroturf is the term for phony grassroots groups created and funded entirely by industry.) She is aware of only a couple of these groups in Canada, and they are almost laughably obvious, such as the Canadian Hair Loss Foundation, a front for the maker of Rogaine. "People don't form support groups because of hair loss. That's horrendous, outrageous stuff, but it's not representative of what's going on out there, it's the exception," Ms. Wong-Rieger said. She said the pharmaceutical industry's poor image is due to the fact that it makes a lot of money, which seems incongruous in Canada's public health-care system. As a result, the public seems to be willing to accept broad condemnations of drug companies, instead of recognizing that each corporation has its own identity. "Frankly, there are some companies that I won't work with because they are too obsessed with the bottom line. But the majority of pharmaceutical companies are open-minded, willing to have good partnership with consumer groups, and a couple of companies are truly benevolent," Ms. Wong-Rieger said. As a former president of the Canadian Hemophilia Society she was highly critical of some pharmaceutical companies during the investigation of the tainted-blood tragedy. But that scandal also taught her the idea that corporations are bad and charities are good was simplistic and false. "Look at the behaviour of the Red Cross: They were the worst of the all," Ms. Wong-Rieger said. "It makes you realize that poor ethics has nothing to do with profit. "What we have to do in the voluntary sector is work with the ethical companies and give them credit for it. That way it will be a win-win for all of us."