Why I took pharma money as a patient advocate. And why we should take more.
The first time a pharmaceutical company rep offered me money, we were sitting in my backyard. He’d suggested lunch and I’d offered tuna sandwiches at the picnic table because my house was a mess and my four-year-old was napping upstairs.
Phil worked for a public relations firm, doing business with the multinational pharmaceutical industry. He was a smart, sophisticated, francophone Montrealer who wore beautiful shoes and smelled like something expensive.
I was a single working mother and grassroots activist in the emerging cancer patient advocacy movement. I wore mom-jeans, and needed a haircut. My position was that while patient groups—like the breast cancer one I was with— and drug-makers both want better treatments, we didn’t have the same goals. Patients want cheaper drugs, and industry wants to maximize profits. Patients want evidence-based information, and industry wants faster approvals. End of story—or so I thought.
For five years, I had been attending the U.S. National Breast Cancer Coalition lobby day in Washington, where, as far as I knew, I was the only Canadian. Phil had heard about the advocacy, education and support our local group was doing in Burlington, Ont., and he’d come to offer funding for more of us to attend the conference. I was reluctant—mostly because of the moralizing I’d heard from advocates opposed to pharma funding. Phil asked one question: “Do you stay home, alone and smug, or take everyone to Washington and learn how to make a difference?”
Our group took the money, packed a minivan full of survivors, and headed to Washington to learn how to get the attention of Canadian MPs by shadowing U.S. advocates lobbying their lawmakers. Not long after that, we put the money and the lessons learned to good use and were one of a handful of survivor groups that successfully lobbied the government of Canada for $30 million to establish the National Breast Cancer Research Initiative.
Today, pharmaceutical funding of patient groups is more contentious than ever, seen as the “pass-fail” test of the moral and ethical legitimacy of an advocate, and in my opinion, the sole measure of a group’s value.
To be fair, stories about pharma offer lots of well-deserved exposure of unethical practices, including the greedy, aggressive marketing lies that ignited the opioid epidemic. But a distinction should be made between the impact of multimillion-dollar marketing on physician-prescribing behaviour and the impact of pharmaceutical companies offering funding to patient groups that lobby for issues pharma typically supports (evidence-based disease strategies) and also, typically, doesn’t (national pharmacare).
As a long-time cancer advocate, I’ve invested thousands of hours grinding away at fundraising campaigns that target donors and sponsors—including pharmaceutical companies.
My proudest experience as an advocate happened in 2004, when I was part of a group that took money from 10 pharmaceutical companies and teamed up to secure federal funding for what would become Canada’s national cancer plan, the Canadian Strategy for Cancer Control (CSCC).
The plan had been formulated by more than 700 volunteers—cancer doctors, radiation therapists, pharmacists, nurses, patients, and scientists—over a period of 10 years, but because the federal government was disinterested, the plan had no public profile and was circling the drain.
Frustrated and desperate to salvage a lifetime of effort, more than 70 Canadian cancer organizations, patients, and medical professionals created the Campaign to Control Cancer (C2CC) and mobilized public and political support.
With $1.5 million in funding from pharma companies, and another $25,000 from cancer charities and groups, the C2CC launched full-page ads in the Globe and Mail, listing all of the supporting organizations and funders in alphabetical order—all 70 the same size and without any logos.
The national media seized upon the topic and the public took notice, lobbying elected officials to fund the plan. On November 24, 2006, the partnership between advocates and pharmaceutical sponsors helped push the cancer plan all the way to Parliament, where the Prime Minister announced $250 million in funding for the Canadian Partnership Against Cancer over five years. It was the first national cancer plan for Canada, and the first (and last) time the cancer community was so unified.
In the subsequent years, many of the cancer advocacy organizations have disappeared. The Harper government pulled the plug on funding for community groups like Willow Breast Cancer Support Services that offered group support across Canada, and the 2008 global economic crisis and a subsequent loss of donations brought an end to many groups and any good they might be doing today.
But we still need them, because the work they do in terms of peer support, navigation through complex systems, education, and advocacy for change is not available in the public system.
In the area of cancer care alone, the aging population of baby boomers is expected to drive a 70 percent increase in the number of new cancer patients over the next 10 years. Provincial cancer systems focus on critical clinical care, and few patients get the psychosocial help that peer groups often provide. Without a significant investment of resources in the future, that will continue to decline.
And government funding along with individual donations to charities is declining. The recent Thirty Years of Giving report found that only a small number of (mostly older) Canadians are giving, while donations from younger Canadians are decreasing.
It’s time to get beyond the shaming and blaming about corporate and pharma funding, beyond the unrealistic longing for federal and provincial governments to fund patient groups, and beyond critics throwing righteous barbs from the sidelines.
Innovative funding options include social impact investments and bonds, which have emerged as an instrument that can bring together private investors, social service providers and governments through a pay-for-performance contract focused on achieving social outcomes, with mechanisms to ensure public confidence. Heart & Stroke has partnered with the MaRS Centre for Impact Investing to pioneer the first health-related social impact bond in Canada, funding the upfront costs of a hypertension prevention initiative which the Public Health Agency of Canada will pay for if it works.
Advocates and funders need to find more new ways to attract investment and to discover—as I did—that we can serve public interests and maintain public trust without always being in opposition to private sector funding. We keep the public’s trust by being able to show who we are, where we are going, what we’re doing to get there—including where our money comes from and how it’s spent—and how others can join in and make a difference in the lives of people we serve.