HESA Committee Report

Dissenting Report (Rare Diseases)

Summary

Having heard the testimony of 24 witnesses over seven meetings, the DRAFT REPORT ON BARRIERS TO ACCESS TO TREATMENT AND DRUGS FOR CANADIANS AFFECTED BY RARE DISEASES AND DISORDERS represents both the findings and the recommendations of the majority of committee members. Conservative members believe that Canadians need better access to their rare disease treatments and medications.

While the summary of evidence heard is a good representation of the testimony heard from witnesses, the Conservative members of the committee disagree with several of the proposed recommendations, specifically, the proposed changes to the Patented Medicine Prices Review Board (PMPRB) and making rare disease funding part of a national pharmacare program. As such, there is not unanimous agreement with recommendations 8 and 13.

Recommendation 8: That the Government of Canada move forward with implementing proposed changes to the Patented Medicines Regulations to address high drug prices in Canada.

Evidence gathered outside of the committee testimony from stakeholders engaged in clinical trials, from academia, and from pharmaceutical companies suggests that the proposed changes to the PMPRB process will have unintended negative effects. The changes are predicted to lengthening the time of approvals, increase costs, and eliminate profit opportunities for producers. In turn, this will discourage pharma companies from doing clinical trials in Canada and will restrict the access of Canadians to new medicines. 

Testimonies before the House of Commons Standing Committee on Health regarding the Pharmacare Now study revealed the adverse results of government-run pharmacare programs when New Zealand implemented similar changes. The program resulted in reduced access to new drugs for patients and drug shortages. Canada is already experiencing drug shortages related to pricing. On four occasions in the last year, for example, epi-pen injectors were unavailable. The price paid in Canada is $100 versus the price in the US (where there was no shortage) was $300. In order to obtain some epi-pen injectors, Canada paid $175 from another vendor. There are so many drug shortages in Canada that the government publishes a webpage listing them https://www.drugshortagescanada.ca/

While we agree that changes to the PMPRB need to be made in order to make approvals faster, less costly, and to strike a balance between low prices for Canadians and high enough profit margins to encourage pharmaceutical companies to offer the drug. However the changes currently proposed will not accomplish these goals.

Removal of recommendation 13: that the reimbursement of drugs for rare diseases be included as part of a national pharmacare program established by the government of Canada, in collaboration with the provinces and territories, through amendments to the Canada Health Act, as recommended by the House of Commons Standing Committee on Health in its report entitled Pharmacare Now: Prescription Medicine Coverage for All Canadians

As laid out in the dissenting report to the Pharmacare Now report,  the Conservatives do not believe that a national pharmacare program is the fastest or most efficient way to address coverage of prescription medications for the small percentage of Canadians who do not currently have access. The Conference Board of Canada recently published the latest information, indicating that 660,000 Canadians, mainly in Ontario and Newfoundland and Labrador, are without coverage.  While we do support increased federal government support for rare disease medicines, we do not believe the model outlined in the HESA report is the best approach.

As rare disease conditions are chronic in nature, treating one patient for 10 years can cost from $1 million to $49 million. In its submission to the Committee, the Canadian Forum for Rare Disease Innovators (RAREi) further explained that though these drugs have a high cost per patient, their overall budgetary impact is comparatively low, representing 3.3% to 5.6% of total pharmaceutical expenditures between 2007 and 2013. However, as more medicines are discovered, the costs will escalate.

Mr. Douglas Clark, Executive Director, Patented Medicine Prices Review Board, explained to the committee that these drugs pose a significant risk to the financial sustainability of the health care system.  For this reason, a sustainable solution to fund rare disease medicines is needed.