Delay PMPRB Reforms

The issue

Federal reforms slated for January 1, 2021 will change how drugs are priced in Canada and there could be dire implications for Canadians living with ALS. There are dozens of ALS therapies currently in clinical trial worldwide and every Canadian living with ALS today and in the future will need timely access any of those that are proven to be safe and effective.

Background

In December 2017 the federal government proposed amendments to the guidelines that govern how a federal agency called the Patented Medicine Prices Review Board (PMPRB) sets the price at which companies sell their drug to distributors across the country.

While the reforms are intended to result in lower drug prices, we believe they could have a dire effect on Canadians with ALS. Specifically, we are concerned the new PMPRB guidelines could very well mean that ALS therapies being tested in clinical trials today may not be available to Canadians down the road as urgently as they are needed, even after they are deemed to be safe and effective.

We believe any efforts intended to lower prices must be made in a balanced way that continues to encourage innovation and enables Canadians to be able to access innovative new therapies in a timely way. The issue is not about whether a price is too high or too low – we don’t have the expertise or mandate to make those determinations – it’s about a model that will result in fair prices, so that companies want to bring their ALS therapies to Canada for clinical trials as well as market approval.

We have been actively advocating on this issue as a member of the Health Charities Coalition of Canada (HCCC), and we have reached out to government directly through three formal responses to the PMPRB – one in February 2018, one in February 2020 and one in June 2020. The PMPRB reforms were a significant topic of conversation with MPs at our March 2020 Hill Day, and we have also reached out to the federal Minister of Health.

What you can do

With the reforms slated to come into effect on January 1, 2021, there is a critical opportunity right now for Canadians affected by ALS to make their voices heard with the federal government. Use the tool below to send a letter to your elected official.