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.
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Well put Pat
Thanks Pat for writing from your perspective on this, excellent read and very valuable. I would just add that when it relates to evidence, some caution is required because not all evidence is the same, even systematic reviews and meta-analyses, the basis of how many clinical practice guidelines are performed. This piece from 2016 may be of interest in this respect:
“The man who made scientists question themselves has just exposed huge flaws in evidence used to give drug prescriptions”
– https://qz.com/784615/the-man-who-made-scientists-question-themselves-has-just-exposed-huge-flaws-in-evidence-used-to-give-drug-prescriptions/
Corporate funding of health advocacy groups can buy agreement, acquiescence, silence, or mitigation of criticism – but it
always buys something. Anyone tempted to believe this corporate cheerleading needs to read Sharon Batt’s eloquent book Health Advocacy Inc., which shows all that is wrong with health advocacy groups taking money from pharmaceutical companies. Groups are funded by industry only as long as they spout – or don’t oppose – industry messaging. Industry dollars support industry goals. Support the groups that don’t take pharma funding! Here’s a list:
http://pharmedout.org/pharma-free-groups.html
As Managing Director for Canada’s only national, member-owned advocacy co-op I would like to contribute a dissenting opinion.
While we agree patient groups and their priorities have too long bounced between financial foster parents in industry and government, my fellow directors and I founded Patient Critical Co-op on a different belief.
For a strong patient voice to develop and become a responsible and truly representative stakeholder in Canadian Healthcare, we need to cultivate & guide our own voice, or forever be beholden to other interests and priorities.
For that reason, Patient Crirical Co-op’s By-Laws forbid us from taking any money from any outside organization.
PatientCritical.com
Great work. I am sure that was a difficult decision. But I appreciate that autonomy is priceless.
I am reminded of a thought-provoking documentary called Pink Ribbon, Inc that talked about the dark side of corporate sponsorship of breast cancer awareness campaigns.
Thank you, Pat, for giving people a window into the other side of this story. We should never forget the fact that patient advocates come to their advocacy honestly, typically because they themselves or a family member is affected by a disease condition. In the context of their lives, that health issue must represent a pretty “big deal”, so much so that they have volunteered to take actions that will result in some kind of improvement. The suggestion that a patient advocate would choose to prioritize the interests of an industry partner over their own health (or the health of a loved one) must seem puzzling, or even hurtful, to those who volunteer their energy and time in this way. That is not to say that industry funding doesn’t present a unique set of challenges and risks to an organization, it just means that we need to consider those risks in a more balanced manner. Patient organizations, health care providers, and industry all understand the potential for financial relationships to complicate appropriate decision-making even by the most well-intentioned, which is why together they have established so many rules, conditions, and disclosures to remove as much doubt as possible.
Those of us working in health care and in the health policy arena will have seen first-hand the incredible contributions that patient advocates have made in terms of raising awareness, delivering education, advancing research, fundraising, and advocating for themselves. It seems strange to me that we could question the sincerity of, for example, a lung cancer patient because a company happened to provide an unrestricted grant for research, sponsored a reception at an annual symposium, or provided support to train and build capacity for self-advocacy?
Absolutely dead wrong. Big pharma knows exactly what it is doing. The patient groups it funds end up “advocating” for Medicare funding of outrageously priced drugs, licencing and use of incompletely studied drugs and tests…
Anyone who is not compromised would be able to ask the simple question “why would a pharmaceutical company fund us”? The ONLY answer is “to sell more drugs, and make more money”. However, I get it. Like the organizers of sports and art events funded by Big Tobacco, the doctors too cheap to buy their own lunches or pay for their own education… she rationalizes her (in my view), unethical choice. Like them, she says “I am not compromised”. I heard that from my colleagues for decades… the evidence clearly showed they were. So is Pat Kelly.
Further, having taught evidence based medicine for much of my career, I have been around long enough to see the world as it is, not how I would like it to be.
Good point Stephen.
I agree that its wise to base decision-making on evidence rather than fearmongering, vague claims and ranting.
Patients do not enjoy a privileged position in our health system. Their needs and preferences are rarely and inadequately considered or accommodated at the institutional or governance level. The long term and inexplicable persistence of hallway medicine, disaggregated and selective wait times monitoring and the failure to fund certain worthy cancer drugs in Ontario simply because they come in pill form would be examples of where the patient’s needs and best interests go to the back of the funding line.
I’ve also been around long enough to see the world as it is and I struggle to understand why our system is so often so insensitive to patient needs…despite the rhetoric of patient-centricity. If we really don’t want drug companies to fund patient groups, or help patients navigate this byzantine system, or detail physicians on their drugs, then our public system has to step up and solve these problems at the source. It hasn’t. Patients ought to have meaningful, routine input in policy, programs and practices. To often still, they don’t. Many would agree pharma funding is imperfect but exactly how would patient voices have been heard and created change without it?
Thank you Healthy Debate and Pat Kelly for providing some balance on this issue. It is insulting to me, a long time patient advocate and someone who has been living with severe Rheumatoid Arthritis for 35 years that anyone would assume I would want medicines available to patients that were not based on the best possible evidence available to improve and save lives