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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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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Understanding the pan-Canadian Pharmaceutical Alliance (pCPA) and how it affects those fighting skin cancer

Guest blog post by Elizabeth Eakin

Within Canada, many patients are forced to move outside of their homes to receive the treatment they need. As skin cancer is affecting more and more Canadians each year, a high volume of patients all over Canada are forced to travel in order to receive their suited treatment. Currently, Melanoma is the fasting growing cancer in Canada, with an estimated 6,800 diagnosed in 2015. As the incidence continues to increase, greater access and availability to treatment are needed. One of Save Your Skin foundations immediate goals is to provide melanoma patients with access to information about trial drugs as well as provide financial support to allow patients access to their suited treatment. This is an intricate and expensive task that takes knowledge of the drug process within Canada to fully understand.

Within Canada, drug authorization of sales is an extremely long process. It can take up to two years before the drug is approved for review. During these transparent years, the trial drug undergoes scientific testing’s regarding safety, effectiveness and quality of manufacturing. From there, the pan-Canadian Oncology Drug review products, Common Drug Review (CDR) and the non-oncology drugs review (pCODR) overlook the drug. The review time includes comparisons to existing drugs on the market as well as cost-effective evaluations. Once assessed, the review is sent out to all participating federal, provincial and territorial drug benefit plans in Canada, which make the pan-Canadian Pharmaceutical Alliance (pCPA). They decide whether joint pan-Canadian negotiations will occur for the drug product. If they decide to move forward, one jurisdiction will lead with the manufacturer, while an agreement between all other participating jurisdictions will be signed. If an agreement can be reached between participating jurisdictions and the manufacturer, a letter of intent will be signed and shared with all participating jurisdictions. After the pCPA process, each jurisdiction is then responsible for individually making a decision on funding through their public drug plan. These plans are then entered into a jurisdiction specific product listing agreement with the manufacturer.

After this long process individuals can gain access to the pharmaceutical drug depending if the province supports and funds it. The specificity of which provinces/territories provide access and funding makes the process long and tumultuous. In order for each patient to get the treatment they need, many need to travel, adding further expenses and stress. For those struggling with skin cancer, the Save Your Skin foundation does all it can to provide patients with access to trial treatments as well as financial and emotional support. As a foundation, we want to help each patient receive the best individual care possible, so they can fight their hardest against this disease.

Figure 1: pan- Canadian Pharmaceutical Alliance


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Next Webinar December 17: The Drug Evaluation Process – Patient Input Submissions and Responsible Advocacy for New Treatments


This webinar will dive into the process used to evaluate drugs, which concludes with recommendations about whether they should be covered by provincial formularies.   In particular, this webinar will look at how patients can engage in the process. Following the presentation, there will be a live Q&A. The presentation will address the following topics:

  • When and how can patients engage with the drug evaluation process?
  • What are the best practices to promote the patient’s voice?
  • Looking ahead: how can we improve patients’ opportunities to engage?

The webinar will be hosted by Bill Dempster of 3Sixty Public Affairs. As CEO of 3Sixty Public Affairs, Bill Dempster helps health charities, businesses and associations understand health policy and effectively engage with governments.   He applies a deep business, health policy, legal and government experience to find mutually beneficial solutions to complex problems. 

To register

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