Will the government seek independent patient input on drug policy?

HALIFAX—In the lead-up to some form of national pharmacare, the Trudeau government plans to launch a new national Canadian Drug Agency as policy central for the regulation of prescription drugs. Accommodating voices from patient communities will be a challenge, because health advocacy organizations have long made competing claims across a wide chasm. I’m cautiously hopeful that Team Trudeau will jettison a longstanding, dubious practice: soliciting input from patient advocacy groups funded by the pharmaceutical industry. I’ve argued that such funding helped fracture the patient community. Thirty years ago, governments in Canada supported community-based advocacy groups; now such groups are expected to find private resources to fund their work. Transnational corporations stepped into the void, offering money to cash-strapped public interest groups via public-private partnerships or PPPs. The companies that opened their coffers to patient groups advocating for drug policies were pharmaceutical companies bringing new drugs to market. Choose your narrative: Robin Hood, or the big bad wolf? Dr. Eric Hoskins, Chair of the Advisory Council on the Implementation of National Pharmacare, speak to the media to announce the remaining members of the Advisory Council on June 20, 2018. Ms. Batt writes that for too long, government has sought input on policy from industry-funded patient advocacy groups. The Hill Times photograph by Andrew Meade Mainly the latter, I say. But a major transition in drug policy offers a chance to rethink the PPP model. In preparation for its national pharmacare program, the Trudeau government seems likely to amalgamate functions of three drug regulatory agencies: Health Canada’s Marketed Health Products Directorate, the Patented Medicine Prices Review Board (PMPRB), and the Canadian Agency for Drugs and Technologies in Health (CADTH). Collectively, these agencies were set up to protect the public against unsafe or ineffective drugs, prevent false or exaggerated claims, control prices, and keep the overall public healthcare system sustainable by choosing judiciously which interventions to fund. None of these controls would be necessary if unsafe, ineffective, overpriced drugs were never a problem. In fact, like most private sector companies, drug manufacturers want to get their wares to market quickly, make a hefty profit, and maximize their market size. Tension between the public and private sectors over drug policy is inevitable. The intended beneficiaries of drug regulation are patients, who presumably want safe, effective drugs, information they can trust, and a sustainable health-care system. Indeed, public advocacy helped create the drug regulatory systems now in place. How then have we arrived at a place where patient advocates promote strong patent protection, hail drug ads as necessary information, and demand public funding for drugs when evidence of safety or effectiveness is lacking? The growth of patient advocacy movements, spearheaded by AIDS activists and followed by patients with a host of other conditions, was a godsend to an industry bent on playing hardball to maintain its profits. The withdrawal of public funding of these groups, the government’s active encouragement of PPPs, and waves of new drug development, opened the door to patient activists who defend the PPP model. Research in countries where data is available tells us Big Pharma now pours millions annually into patient advocacy groups. Groups that question the party line risk losing pharma’s support. The effects are seen at the three existing agencies tasked with protecting patients’ interests. Patient advocates urge Health Canada to approve drugs quickly, although early predictors of a drug’s actual usefulness are unreliable. Last year, in an open letter to the prime minister, two patient advocates on a steering committee of the PMPRB opposed the agency’s steps to control drug prices. At CADTH, two separate investigations found that a majority of patient assessments of new drugs were by advocacy groups funded by the same drug companies hoping to have their drugs placed on formularies; the groups almost always recommended placement. Rationales for including patient’s voices at decision-making agencies are compelling: patients are directly affected by these decisions and they experience first-hand how drugs affect their bodies and lives. But with limited spots at the table, which groups or individuals to include? Increasingly, patient advocates are rejecting the PPP funding model. At the agencies, last year CADTH appointed an advisory committee more independent than a now-disbanded Liaison Forum, and a recent PMPRB consultation funded the attendance of more than 80 groups, the majority independent of pharma. The wolf devoured Red Riding Hood’s grandma, but the woodsman heard Little Red’s cries and disgorged her. Patient advocates deserve no less: it’s time to free public consultations on pharmaceutical policies from Big Pharma’s jaws. 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