Pangaea Express: Uncovering PMPRB's "Mythbusting" Campaign Against Patient Groups

May 28, 2021

By Suzanne SolmanMarla Weingarten

Twitter was abuzz yesterday with a letter sent from Christopher MacLeod, Canadian Cystic Fibrosis Treatment Society to the President of the Treasury Board, House of Commons and the Auditor General Canada with a request to investigate the PMPRB for “targeting and de-legitimizing the Patient Voice”.

Through an Access to Information and Privacy request, Cystic Fibrosis Canada learned of the PMPRB’s media campaign using $56,000 of tax-payer money to counter the “upper hand” the industry has gained in opposition of the reforms and the “disinformation” spread by patient groups. The PMPRB’s communication plan calls out the CF community, CORD and the Best Medicines Coalition for their “aggressive public relations strategies that are aligned with the messaging promoted by the industry.”

The PMPRB’s communication plan, dated February 7th, 2021 describes a “mythbusting” campaign directed at the Canadian public through videos, webinars and other social media tactics to provide “accurate information” using a “more human-interest approach.”

In his letter to the President of the Treasury Board, Chris MacLeod states, “the regulator now seeks to target, marginalize and de-legitimize the democratic participation of the patient voice…. Patients were targeted and maligned by the regulatory body authorized to protect the patients from excessive pricing.” MacLeod asserts the PMPRB has violated many government directives including the requirement to be “objective and non-partisan” to “protect their [Canadian’s] interests and well-being” and to ensure “communications must be objective, factual, non-partisan”.

In a separate letter to the Prime Minister, Kelly Grover, CEO Cystic Fibrosis Canada, writes, “to suggest that we are misinforming and thereby misleading the public is insulting and completely inappropriate for an agency whose mandate is to protect our cystic fibrosis community and the wider Canadian public…to specifically target the credibility of this community is beyond what I could comprehend as reasonable or appropriate for a federal agency tasked to deliver on the government’s policy direction.”

Durhane Wong-Rieger, Canadian Organization for Rare Disorders, posted on CORD’s website, her dismay in the PMPRB’s advocacy campaign against patients. While global experts on pricing policy from the UK and U.S. have taken part in webinars CORD has held regarding the new Regulations and Guidelines, the PMPRB has never acted on invitations to participate. This lack of true dialogue was evident right from the get-go, as Wong-Rieger references the dismal response from the PMPRB to the 2019 Working Group’s request for case studies to illustrate the outcomes of the pricing regulations. After months of asking, the PMPRB presented six case studies with no time for discussion and no transparency in their calculations.

As mentioned in previous Pangaea Reports, participants in this Working Group repeatedly wrote letters of complaint to the Chair with concerns on the fairness of the process and the belief that the outcome was already predetermined. Though an issue still playing out in Courts, it is Interesting how the PMPRB Guidelines calls for transparency in rebates, yet transparency from the pricing Board doesn’t seem to be a two-way street.

The letter to the President of the Treasury Board calls for an “immediate halt be put to the July 1, 2021 implementation date of the PMPRB Regulations and Guidelines”. With just over a month until this impending date, will this direct call from patients bring about any further dialogue with the government on this very crucial matter?

For more information, please contact Suzanne Solman or Marla Weingarten.