Patients shut out of process leading to the release of revised guidelines by the Patented Medicine Prices Review Board

TORONTO and MONTREAL–As exciting medical advances continue to be made around the world, there is a shared concern that people in Canada will not be able to access these scientific breakthroughs. Leading health charities and patient groups that represent 2.9 million patients across Canada are working together to raise concerns about revised guidelines expected by the Patented Medicine Prices Review Board (PMPRB) this week, that will limit access to treatments that could improve and even save lives.

“The PMPRB announced briefings for media and industry on the revised guidelines, yet patients, who are at the heart of policy questions around access to new medications, were not considered. The fact that patients have been overlooked has been a consistent problem from the start of the PMPRB consultation process that began in 2017. Patient groups have been saying for years that this consultation process has failed the patient community, and our views have not been properly taken into account in the development of the proposed changes. The cystic fibrosis (CF) community is the first to experience how these changes will limit access to new, life-changing medicines, but all Canadians are right to be worried,” said Kelly Grover, President and CEO of Cystic Fibrosis Canada.

“We have seen what the CF community has experienced, and we are concerned that the vision loss community will face this situation too. We are concerned that we won’t be able to access the new medications, gene and cell therapies that restore sight and avoid blindness,” said Doug Earle, President and CEO of Fighting Blindness Canada.

Canada has prided itself on universal access to healthcare. This means that when diagnosed with an illness, Canadians can receive best-in-class treatment. According to a recent survey commissioned by the group, a majority of Canadians (70 per cent) recognize that new, innovative prescription medicines developed over the past 20 years have improved the lives of Canadians.i

But that access is at risk due to the PMPRB changes scheduled to take effect in January 2021. There is a fear that doctors will only have cheaper, older and less effective drugs available to them to treat patients as new drugs will not be made available in Canada. There is a worry that there will be fewer clinical trials taking place locally when patients need new medicines to try.

These changes will result in wider inequities, prompting those that can afford it to leave the country for better treatment options. And when Canadian families are faced with a dreaded diagnosis, they will need to make heartbreaking decisions.

The same public opinion survey showed that 7 in 10 people in Canada had not even heard of the proposed changes to how prices for new prescription medicines in Canada are reviewed and approved.ii Given the implications of these changes on people’s health, the public should be consulted by government so that all Canadians can share their opinions on government’s plans.

To give Canadians the best health care possible, the coalition is asking that all stakeholders collaborate for a workable solution where the patient is at the center. This means the pharmaceutical industry needs to find a way to lower prices. And government needs to prioritize human lives over saving costs. Eighty-two per cent of Canadians agree with this approach.iii

The patient organizations behind the new campaign, “Protect Our Access”, include:

ALS Society of Canada
Canadian Cancer Survivor Network
Coalition Priorité Cancer au Québec
Colorectal Cancer Canada
Cystic Fibrosis Canada
Diabetes Québec
Fighting Blindness Canada
Lung Health Foundation
Ovarian Cancer Canada
PROCURE – The Force Against Prostate Cancer
Québec Breast Cancer Foundation
Leukemia & Lymphoma Society of Canada

These 13 health charities and patient groups are calling on government to strike the right balance of both economic sustainability and ensuring Canadians families can access breakthrough treatments, both now and in the future.

A majority of Canadians (80 per cent) believe the government should ensure that Canadians have access to new medicines for rare diseases in Canada at the same time as citizens in other countries get access to them.iv Let’s work together to protect this right.

About Protect Our Access
A group of patient organizations have come together to represent the voice of the patient in policy discourse with regards to access to innovative medicines. The objective is to communicate to government and the public the importance of protecting timely and equal access to innovative medicines for patients; striking the right balance between reducing costs and ensuring Canadians continue to have access to new medicines. In addition to the non-profits investing their own resources, a portion of the campaign funding has been made possible through unrestricted grants from two innovative medicines companies.

About the Public Opinion Survey
Hill+Knowlton Strategies research group, Perspectives+, conducted a study with a total of n=996 adult residents from across Canada. The survey was conducted online between October 2-6, 2020. The sample was randomly drawn from Leger’s web panel of potential survey respondents. Post-stratification weights were applied to the sample based on 2016 census population figures to ensure representation by province of Canada, age and gender. An associated margin of error for a probability-based sample of this size would be ±3%, 19 times out of 20.

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