The little-known Patented Medicines Prices Review Board (PMPRB) plays a central role in determining the prices paid in Canada for patented drugs. We pay the third highest prices for patented drugs among Western countries after the United States and Switzerland, as well as being the only country with a national healthcare system that does not include drug insurance in its public health insurance. After initially proposing a strong reform to the drug pricing system in 2019, the PMPRB released a greatly watered-down revised reform this spring. What was going on here? BCAQ was waded into the fray of drug pricing over the summer with Sharon Batt. 

As you may know, Sharon Batt, one of the founders of Breast Cancer Action Quebec (originally Breast Cancer Action Montreal), works extensively on the complex issue of drug policy and pricing in Canada. In addition, Sharon has studied the effects of pharmaceutical funding on “patient advocacy groups”, using the impact on breast cancer groups as a case study of this important issue. In 2017, she published the excellent book, Patient Advocacy Inc.

In her book, Sharon demonstrates how pharmaceutical companies target patient advocacy groups for funding with the result that the groups make drug policy a specific focus, adopting the positions defended by pharmaceutical companies regarding drug-pricing policy and quick access to new, very expensive medicines. Rapid access to new drugs sounds like an obvious good goal but is, in fact, often very problematic. As we have seen repeatedly in the field of breast cancer, new drugs can have very serious side effects that were not well documented in clinical trials. Also, once in general use, they may not prove to be more effective at all than older and much cheaper drugs, among other issues.

In addition, individual pharmaceutical companies as well as their association, Innovative Medicines Canada, and the major public relations firms they also hire all lobby hard against price controls, for faster approvals for new drugs and for “patient choice.” This means that at both the federal and provincial levels we face a large, very deep-pocketed lobbying block using identical arguments and strategies against policies that would better control drug prices in Canada.

Sharon remains in close contact with us and last year, she led Breast Cancer Action Quebec into the battle over reforming the Guidelines of the Patented Medicine Prices Review Board (PMPRB) which is a central component in controlling the very high price of patented medicines in Canada. Canada pays the third highest prices for patented drugs among Western countries after the United States and Switzerland. In addition, prescription drugs are not part of our national universal medicare program except when they are administered in hospital (Medicare only covers hospital services and physician visits). However, each provincial and territorial government offers a drug benefit plan for eligible groups. The list of drugs a province or territory has approved for funding is called the provincial formulary.

Provincial health ministries are susceptible to the same lobbying pressure as the federal government, in their case to add new drugs to their formularies. Pharm-funded patient groups lobby their provincial ministries to add new drugs to the formulary even when a federal government review recommends against funding. The result is that one province will buckle to lobbying pressure and put a drug on its formulary, then the other health ministries are pressured to follow suit. Cancer drugs are one of the major categories of new drugs with high prices, along with drugs for rare diseases, where pharma-funded patient groups are particularly active in drug lobbying efforts.

The PMPRB is a body that is unknown to the general public and drug pricing policy can appear to be a very arcane field. This is a major problem because it means that battle over the reform to drug pricing policy is not followed by the general public when at issue is the question of whether many Canadians can afford to pay for their prescription drugs in addition to the huge costs to our healthcare system. Overpaying billions of dollars for drugs distorts the allocation of resources within the healthcare system, but also within government budgets as a whole as health spending represents the lion’s share of budgets.

In 2019, the PMPRB proposed an impressive reform to its Guidelines that determine the maximum price to be paid in Canada at all levels for each patented drug. Breast Cancer Action Quebec, along with all the progressive, independent organizations, unions and academics and researchers, came out strongly in favor of the reform. Drug companies, their lobby groups and pharma-funded patient advocacy groups vigorously opposed the reform. After the first round of consultations, the PMPRB revised their proposed reform this year and released it to stakeholders in the spring for consultation. All the groups that previously supported the reform, including ourselves, were now completely dismayed by the new, very watered-down “reform”. The turnaround was profoundly disappointing.

Sharon now works with the group Independent Voices for Safe and Effective Drugs and this summer we collaborated to write a brief on behalf of IVSED and BCAQ to submit to the PMPRB consultation. In all, 112 briefs were submitted, many from the pharmaceutical industry and their groups. But a strong minority of briefs from independent groups, unions and academics denounced the weak new reform. The line between the two camps is clear. Also, many independent groups and unions now call for stakeholders to be required to state upfront whether or not they receive funds from the pharmaceutical industry. The contrast in position between independent and pharma-funded groups is clear.

Our brief is straight-forward, although some of the issues are a bit technical. We encourage you to read it. Sharon and I both loved the experience of working together, so it is something we envision doing more of.

A final thought. As I went through this process, it became so clear to me how important – and rare - independent patient advocacy groups are. We are so lucky that so many women and men are committed to BCAQ. Our voice is important.

Listen to our inaugural podcast – an interview with Sharon Batt.

Jennifer Beeman asks her some great questions and her answers are passionate and revealing.