drug pricing in Canada

Looking Back at 2021

Our 2021 Annual Reports are out now!

It’s always a rewarding experience to look back on the past year and see how much the Foundation has accomplished.

Despite another year amid the pandemic, Save Your Skin Foundation and Ocumel Canada have continued to grow partnerships, operations and services, and reach more people touched by melanoma, non-melanoma skin cancer and ocular melanoma.

We are extremely grateful to our community of patients, caregivers, healthcare providers and sponsors who continue to inspire and support us in our endeavors.

Click on the images below to view the reports:



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Webinar: Diagnosed with Skin Cancer? Here’s What To Do Next

View the recording of our webinar ~ February 24, 2022

An Hour with Kathy Barnard

In this webinar, Kathy Barnard, founder of SYSF and melanoma survivor, shares her experience navigating and advocating through the Canadian health care system, which is complicated and can be confusing to many. She helps patients and caregivers understand how to get from diagnosis to surgical and/or systemic treatment of melanoma or non-melanoma skin cancer (NMSC) such as metastatic basal cell carcinoma (BCC), squamous cell carcinoma (SCC) or merkel cell carcinoma (MCC).

Click HERE to view the recording!

And click HERE to download/print a list of Questions you can ask your Doctor

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6th Annual Patients Redefining the Future of Health Care in Canada Summit

6th Annual Patients Redefining the Future of Health Care in Canada Summit
Patients Redefining the Future of Health Care in Canada: COVID-19’s Echo Pandemics — the Way Forward
Week of November 15, 2021:
  • November 15 Echo Pandemics in Healthcare
  • November 17  Echo Pandemics in Indigenous Health
  • November 18 Echo Pandemics: The Way Forward
  • November 19  Patient Planning Session


Click HERE for more information: Agenda, Speakers, and Recording Links


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1 Week Until the Federal Election: Make Healthcare a Priority

Take Action Before September 20

Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you.  Having local candidates hear directly from patients is very powerful.

The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.

Advocating for change has never been simpler and will only take you a few seconds.

Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.

Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.

Click HERE to encourage Government to Make Healthcare a Priority

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Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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National Post: Therapeutic Spotlight on Immuno-Oncology

On September 26, 2018, you may have seen a special insert in the paper version of the National Post across the country, featuring eight pages of informative articles about immunotherapy, an innovative treatment proving successful in several cancer indications.  This special content is the result of a collaboration between sponsoring funders, patient group representatives, and the folks at a group called Patient Diaries.  Over the years, Patient Diaries has coordinated several series such as this, raising awareness of various diseases and their effective treatments.                                                        This time they chose to highlight Immuno-Oncology.

Researchers and clinicians treating metastatic melanoma have been seeing success with these therapies for about ten years, but the growing use of and experimentation with them in recent years has been the topic of discussion at countless oncology conferences and treatment centres around the world.  In fact, just last month the 2018 Nobel Prize in Physiology or Medicine was awarded to James P. Allison and Tasuku Honjo for their discovery of cancer therapy by inhibition of negative immune regulation: immunotherapy.

Save Your Skin Foundation openly discusses the need for access to these treatments by melanoma patients across Canada, and we jumped on the opportunity to be the primary patient group sponsor of this feature, sharing our collective patient experience with these therapies. On page six of the insert there was an article in which both Kathy Barnard and Natalie Richardson of Save Your Skin were interviewed.  We were also given half a page to display informative anecdotes about ourselves and raise awareness of our ongoing support of skin cancer patients.

In addition to the paper version of the Therapeutic Spotlight, a digital space has been placed on the National Post website.  SYSF awareness spots and our patient video from May 2018 can be seen throughout the Immuno-Oncology board – please feel free to take a look around.  There are additional informative articles about innovative treatments for lung cancer, leukemia, and breast cancer.

There is also a blog written by Natalie Richardson, melanoma survivor and Managing Director of SYSF, discussing the barriers to treatment access that many Canadian patients face.  Click here to read the blog: Cancer Patients Receive Unequal Treatment Depending on Stage or Postal Code

To see what else SYSF is talking about, click here to visit our MEDIA page!

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Adjuvant Patient Survey: here is the full report!

In September 2018, Save Your Skin Foundation (SYSF) conducted an anonymous survey of melanoma patients in the adjuvant setting (diagnosed at a stage lesser than stage IV).  This survey, titled “Melanoma Treatments in the Adjuvant Setting,” was open globally, and we received responses from all over Canada as well as from the United States, New Zealand, and Australia.

The survey consisted of 28 questions, which ranged between multiple choice, multi-selection, and write-in, and participants had the option to skip any question. The goal of the survey was to assess the impact melanoma has on patients and their families and caregivers, and get a picture of the treatment plan of the average melanoma patient, what treatment access limitations they have encountered, and what they look for in potential treatment options.

The responses to this survey were used to inform SYSF submissions to provide direct patient feedback as treatment recommendations to pCODR and INESSS.  We provided these submissions with all of the patient comments to support the message that melanoma patients in the adjuvant setting need access to immuno-oncology treatments to prevent their disease from growing into a stage IV diagnosis.

Thank you to all participants who took the time and care to share their perspectives.  We have every hope that the drugs in the pipeline for adjuvant will be approved in every province and territory in Canada.

To read the full Survey Report, please click HERE To request any additional information about the survey please feel free to email


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pre-DPPS Webinar – Health Care Systems in Canada: Where We Are Now

In advance of the upcoming Drug Pricing Policy Summit in Toronto in November, you are invited to join the webinar: Health Care Systems in Canada: Where We Are Now on Wednesday, October 24th from 12:00 – 1:00 PM ET.

This webinar will provide a broad overview of Canada’s drug approval process: Health Canada, pCPA, CADTH and PMPRB with the objective of updating participants on each of the organization’s roles and current initiatives in making drugs available to Canadians.

This is a primer for participants attending the November 13-14 2018 Drug Pricing Policy Summit: Patients Redefining Health Care and for others who would like to have a review of these systems for their interest.

To register for this free webinar, please CLICK HERE.

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SYSF Survey! Melanoma Treatments for Adjuvant Patients

Save Your Skin has the opportunity to submit patient feedback to the pCODR process for the two treatments coming to the Adjuvant setting for Melanoma patients in Canada.  To learn more about the drug approval process and our involvement as a patient representation group, please visit our page: “Let’s Chat: Patient Submissions and Discussion

We believe the ability of stage I, II, and II melanoma patients to receive innovative treatments is key to survival, and to the reduction of progression to stage IV disease.

To inform our upcoming submission, we have created a short survey and request that any and all patients touched by melanoma complete the survey to have their voices heard.  This survey is open globally, to all stage melanoma patients at any point in their journey; but we request that IF you are a metastatic patient taking the survey, but were diagnosed at stage 1, 2 or 3 could you please take some time to remember back to those days and fill in what you can in the survey pertaining to those times.  Were you offered a treatment, were you advised to “wait and watch” and what were those times like for you and your family.

This anonymous survey is now closed.  We thank all who shared their time and experience in responding to the survey.  Stay tuned for news of our completed submission to pCODR and INESSS.

If you have any questions or feedback about this topic or the survey itself, please email

Thank you! 

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Reducing Costs to our Healthcare Budget Shouldn’t Cost Canadians Their Lives

You may have read something in the news lately about a move to lower drug prices in Canada. Or you may not. It’s one of those complicated policy issues that is sometimes misrepresented or over-simplified, and can make your head spin trying to understand all the steps, stakeholders and outcomes involved.

On the surface, lowering the price of drugs in Canada sounds like a good thing, right? If it were that simple, we’d say, “Yes, of course!” Unfortunately, there may well be serious consequences to this move. It Is important to consider them before we move forward.

The first thing to note is that the price does not refer to what individuals pay. It refers to what our provincial healthcare bodies pay manufacturers for certain drugs. Last May Canada’s Health Minister announced that there would be a review of how the Canadian government determines the price of drugs, specifically patented medicines such as cancer drugs. That review is now underway with the purpose of reducing public healthcare spending which, again, sounds like a good thing. However, the less obvious result of this move may be that it will hurt patients by delaying and/or reducing access to new and potentially life-saving therapies. Also, drug companies may decide to invest research budgets elsewhere, thus reducing the number of clinical trials available to Canadian patients, either because state-of-the-art standard of care drugs are not available for the trials or because they prefer to invest where it is a more thriving market. Currently, many patients have the valuable opportunities to be treated with leading-edge therapies in clinical trial settings before they become available to the wider public.

While these proposed changes may reduce the price of drugs and therefore costs to the Canadian healthcare budget, it may well also cost some Canadians their lives.

How do we know that? Because we have seen many situations firsthand where critically ill patients could not get a potentially life-saving treatment because it was either not funded or not available in Canada, despite being available in the US or in Europe. The proposed changes may see these situations becoming more commonplace for patients.

A common response to this issue is to place all the blame on the pharmaceutical industry for charging so much for drugs. It is true, many new promising medicines come with a hefty price tag.  It is also a fact that developing a single medicine can cost millions, or even billions, of dollars. Governments presently rely on a joint federal/provincial/territorial process to negotiate pricing that they are willing and able to pay for drugs. The point is that patients cannot be held hostage in a price stand-off between our government and the pharmaceutical industry.

Twenty-eight Canadian patient organizations banded together to ask the Health Minister and Health Canada to delay implementing its proposing pricing regulation changes until it held a comprehensive consultation among all parties, including patient representatives, to ensure these changes do not compromise the standard of care. We urge them to work collaboratively to find solutions that will support a reasonable balance between the three federal pillars of health care being affordability, accessibility and appropriate use. Patient groups have recommended eight potential alternative ways to identify and reduce waste in healthcare spending that do not compromise patients’ access to new and effective treatments that often mean the difference between life or death. We hope Health Canada and the federal government listen.

You can read these recommendations here. These patient groups include:

Canadian Arthritis Patient Alliance
Canadian Cancer Survivor Network
Canadian MPN Network
Canadian Obesity Network
Canadian Psoriasis Network
Canadian Skin Patient Alliance
Canadian Spondylitis Association
Centre Associatif Polyvalent d’Aide Hépatite C (CAPAHC)
Canadian Treatment Action Council
Carcinoid-NeuroEndocrine Tumour Society Canada
Cardiac Health Foundation of Canada
Collective Oncology Network for Exchange
Cancer Care Innovation, Treatment Access and Education (CONECTed)
Colorectal Cancer Canada
Kidney Cancer Canada
Life-Saving Therapies Network
Lung Cancer Canada
Lymphoma Canada
Melanoma Network of Canada
Myeloma Canada
Pancreatic Cancer Canada
Rethink Breast Cancer
Save Your Skin Foundation
Schizophrenia Society of Ontario
Sickle Cell Awareness Group of Ontario
Team Finn
The Canadian CML Network
The Chronic Myelogenous Leukemia Society of Canada
The Lung Association Ontario

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