Pharmacare, patient groups, and the need for open discourse

Will Canadians ever have the universal national pharmacare program that repeated investigations show will support fair, appropriate health care and that 86 per cent of Canadians say they want? The long-simmering question is once again on the minds of voters. In his supplementary mandate letter, the prime minister called on Health Minister Patty Hajdu to “accelerate steps to achieve a national, universal pharmacare program,” including establishing a Canada Drug Agency, implementing a national formulary, and a rare-disease strategy. As Peter Cleary of Santis Health told Hill Times Research, failure to enact this legislation could “push away progressive voters.” On Feb. 24, the NDP will up the pressure, with a private member’s bill. Other commentators cite political barriers, including the ongoing pressures of COVID-19, lack of provincial ministers’ support, and the pharmaceutical industry’s vociferous but unsurprising opposition to a policy agenda designed, in part, to rein in drug prices. Less obviously, an array of vocal patient organizations stands against key aspects of a plan meant to serve the public interest. Without dismissing other political headwinds, I believe these organisations are the actors with the greatest potential to derail the national pharmacare plan we need. Challenging Big Pharma is one thing; taking on sick people is no one’s idea of heroism. Politicians should listen to patients, but—unlike many prominent patient advocates—I believe Big Pharma has systematically co-opted much of the patient advocacy movement, through strategic partnerships. Canadian health policies accept, even encourage, public-private partnerships. I agree with ethicist and lawyer Jonathan Marks who says society needs public health actors to actively defend the public interest. A collaborative agreement with the private sector makes this impossible. In Canada, we don’t know how much the industry spends on patient organizations, because no laws require disclosure (a transparency law passed by the Wynne government in Ontario lays dormant under Doug Ford’s leadership). Best Medicines Coalition, a group representing 25 patient advocacy groups, submitted a brief to HESA, the House of Commons Health Committee, describing what “Pharmacare for All Canadians” should look like. The funding the coalition and many of its individual members receive from major pharmaceutical companies went unmentioned, and the brief’s claims contained more industry spin than sound health policy. We don’t have to demonize industry actors to recognize they enter partnerships with well-honed strategies to achieve their goals, says Marks. Partnerships with trusted public-sector actors create “health halos” that burnish corporate reputations, but imperil the public interest through “asset exchanges.” Groups receive money, information and advice, and help companies with marketing, clinical trial recruitment, and lobbying about drug access and subsidy. In the U.S., which has a sunshine law requiring companies to declare funding to patient advocacy groups, 14 major pharma companies collectively spent US$163-million on patient advocacy groups in 2015—more than twice what they spent lobbying politicians the same year. Patient groups in Missouri echoed and amplified industry messages that contributed to the state’s opioid crisis. Industry-funded patient groups sponsored a campaign that opposed legislation to contain prices of drugs covered by U.S. Medicare. My research in Canada found that the industry has successfully carried out variations of these strategies. Scores of Canadian patient organizations now rely on industry, not just for funding, but for information about the drugs being marketed for their condition and advice on influencing government policy. Some groups resist; the group I co-founded in Montreal passed a corporate policy that prohibits taking funds from drug companies and other corporations that contribute to, or profit from, cancer. We don’t all think alike and vigorous debates over any policy should be encouraged. With pharmacare in the balance, I’ve joined with other health advocates independent of the industry to put our views on pharmacare on the public record. In briefs and petitions and a presentation before HESA, we’ve argued that a universal, national, publicly funded pharmacare program, well-designed, funded and implemented, would improve drug safety and effectiveness, take collective opportunity gains into account, fairly prioritize access, and increase transparency. We’ve met resistance from the industry-funded patient community. When I attempted to present our perspective at a meeting of CADTH, three prominent activists heckled me so vociferously, my talk was shut down. Such personal attacks undermine democratic debate, but unfortunately are not isolated. Staff at the Patented Medicines Price Review Board have received hostile phone messages and Twitterstorms from advocacy group members calling them “non human robots” who are “sacrificing the lives of the most vulnerable to save money.” At a meeting of the House Health Committee to discuss changes to the Patented Medicines Review Board, NDP MP Don Davies objected when Twitter followers accused some members of not caring: “We all care” he said. It’s disturbing then to see a webinar presentation by Innovative Medicines Canada the latest postponement of the implementation of the new guidelines end with this shout-out to five industry-funded patient advocacy groups: “Stakeholder voices are having an impact: your continued engagement on these consultations is crucial. What can you do? Get involved.” Some of the groups listed have engaged in hostile attacks. Whether or not the industry condones these harassment tactics, I question the ethics of Big Pharma’s rallying patient groups to advance its agenda. Health policy, by its nature, arouses strong passions and any major change in the status quo can feel threatening, but Canada stands alone among high-income countries in excluding prescription drugs from its national health-care program. The pharmaceutical industry will adapt to some loss of profit, as it has in all other countries that have national pharmacare plans. Meanwhile, policy-makers might reflect on the words of Roy Vagelos, a scientist-turned CEO who ran Merck for a decade, beginning in the mid-80s: “The biopharmaceutical business is different than selling buttons and bicycles.” Vagelos was more interested in making new drugs than in making money. And Merck’s stock price did extremely well. Sharon Batt is an adjunct professor in the department of bioethics at Dalhousie University and author of Health Advocacy Inc.: How Pharmaceutical Funding Changed the Breast Cancer Movement. The Hill Times

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Pharmacare, patient groups, and the need for open discourse

Canada needs a universal, national, publicly funded pharmacare program, which would improve drug safety and effectiveness.

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