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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Take the All.Can Patient Survey in Canada

Can you help to shape the future of cancer care? Check out this patient survey launched in Canada.

In healthcare, inefficiency is often caused by neglecting to focus on what matters most to patients. A new international patient survey is gathering insights on inefficiencies in cancer care and is asking Canadian cancer patients (and their carers) to share their thoughts and experiences on where inefficiencies occur, and how cancer care could be improved. Findings will be revealed later this year and used to inform policy discussions on improving cancer care for all.

The survey is being administered by All.Can (, an international multi-stakeholder policy initiative focused on improving efficiency in cancer care. Please share your thoughts, to ensure the patient voice can be at the heart of cancer care. #PatientsAllCan

For more information and to complete the survey for Canada or other countries, visit:

As a member of All.Can International, Save Your Skin Foundation has been working closely with the administrators of this survey, and is here to support you.  If you would like further information or need help with the survey or subsequent reporting of survey responses, please contact us at

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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Webinar: About BioSimilars

As a kick-off to our 2018 webinar series, Save Your Skin Foundation presents:

About Biosimilars: What We Know and What We Want to Know

Friday, January 19, 2018 at 1pm – 2pm EST | 10am-11am PST

Presenters: Louise Binder, SYSF Health Policy, Cathy Parker, Director Policy and International Collaboration – Health Canada, and Helen Mai, Policy and Strategy Advisor, CADTH.

This webinar will be a panel discussion on Biosimilars in oncology, the approval process, and the potential policy position for oncology drug reimbursement. Discussion Points will include Health Canada’s review and approval for sale, CADTH’S role in this area and their involvement with pCPA, and potential policy objectives and position for oncology drug reimbursement.

Updated January 23, 2018:

Missed the webinar?  Listen to a recording of the presentation here, or view it on our youTube channel here.  Also please click here for a page of Resources regarding Biosimilars.


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Better Pharmacare Coalition poll reveals British Columbians oppose changes to planned expansion to BC government’s Reference Drug Program

Patient Poll on RDP Final

Better Pharmacare Coalition eager to work with government to get it right for patients

VANCOUVER, Feb. 9, 2016 /CNW/ – A recent Better Pharmacare Coalition (BPC) poll1 has found that British Columbians oppose expansion of the Ministry of Health’s Reference Drug Program based on concerns that expansion could compromise patient health.

The BC government has approved amendments to the Drug Price Regulation that will expand the Ministry of Health’s Reference Drug Program (RDP). In anticipation of this expansion, the BPC conducted an online poll, which found a resounding 82% of British Columbians are concerned that administrators of the BC PharmaCare program will be implementing a policy that tells physicians which medications they can prescribe for patients, even if it goes against physicians’ opinions of the best care for their patients.

“We are very concerned about senior and low-income patients’ health with the expansion of the Reference Drug Program as they are typically the first to feel the negative consequences of policy reform. When the BC government’s planned policy is enacted, these vulnerable individuals and other patients relying on BC PharmaCare will not be able to afford their current medication, medication that is keeping them well or from declining health,” said Cheryl Koehn, BPC founding member and president of Arthritis Consumer Experts. “Changing a medication in a stabilized patient strictly based on an expanded government pricing scheme is contrary to best practice in today’s policy development environment. We fully support a “patients first” approach and so should governments. Policy should preserve and uphold the health care system’s desire to deliver precision medicine.”

Starting June 1, 2016, the BC government will create three new reference drug categories – Angiotensin Receptor Blocker (reduces high blood pressure), Proton Pump Inhibitor (treats GERD/heartburn), and Statin (lowers cholesterol) – and begin transitioning patients from one to another medication in these groups, which could immediately put their health at risk. By December 1, 2016, the new policy will be in effect.

The BPC poll also found that 76% of British Columbians were concerned about changing BC PharmaCare’s Reference Drug Program to specify a ‘reference product’ that patients must take, or they will have to pay the difference out-of-pocket to stay on their current therapy. It is important to note that the concerns are higher among PharmaCare users and those with a history of chronic disease in their household.

“The BPC has been clear from its inception and through consultations with the BC government’s Pharmaceutical Task Force, that Reference Drug Program expansion will reduce quality health care at the individual level. An economic study,2 conducted after RDP was introduced in BC in 1995, revealed that the policy pushed costs to other parts of the health care system, generated negative health outcomes for the elderly and low income patients.

A 2009 study led by the Canadian Society of Intestinal Research3 showed that changing medication against doctor’s orders, which BC PharmaCare predicted would preserve $42 million in the drug budget, actually cost the BC government $43 million more, a difference of $85 million for BC,” said Gail Attara, BPC member and CEO of the Gastrointestinal Society.

“The government needs to understand what doctors already know – patients are unique and they cannot be treated with a cookie cutter approach. Government should make every effort to meaningfully consult with our coalition’s members when contemplating any change that will touch even one patient’s life. We are ready, willing, and able to work by their sides to get it right for BC patients,” added Attara.

About Better Pharmacare Coalition

The Better Pharmacare Coalition was formed in 1997 in response to BC PharmaCare policy development not being reflective of current medical literature, best clinical practices and the needs of patients in BC. The coalition works together to call for appropriate access to evidence-based medicines that are proved effective and needed by patients in BC. The member organizations include: Arthritis Consumer Experts, Atypical Hemolytic Uremic Syndrome Canada, BC Lung Association, BC Schizophrenia Society, British Columbia Coalition of Osteoporosis Physicians, Canadian Arthritis Patient Alliance, Canadian Society of Intestinal Research, Canadian Osteoporosis Patient Network, Crohn’s and Colitis Canada; Gastrointestinal Society, Kidney Foundation of Canada, Mood Disorders Association of British Columbia, MS Society of Canada, BC Division, Pacific Hepatitis C Network of BC, Parkinson Society British Columbia, Prostate Cancer Foundation BC, Save your Skin Foundation, and The Arthritis Society, BC and Yukon Division. More information is available online at

1 BPC engaged Insights West to conduct an online survey in December 2015 to determine British Columbians’ opinions on BC PharmaCare and in particular their opinions on the expansion of the Reference Drug Program. Results are based on an online study among 858 adult British Columbians. The data has been statistically weighted according to Canadian census figures for age, gender and region. The margin of error (which measures sample variability) is ±3.4 percentage points.
2 Aslam Anis. Why is calling an ACE an ACE so controversial? Evaluating reference-based pricing in British Columbia. Canadian Medical Association Journal. 2002; 166(6):763-764.
3 Skinner BJ, Gray JR, Attara GP. Increased health costs from mandated Therapeutic Substitution of proton pump inhibitors in British Columbia. Alimentary Pharmacology and Therapeutics. 2009;29(8):882–891.

SOURCE Arthritis Consumer Experts

Image with caption: “Patient Poll on RDP (CNW Group/Arthritis Consumer Experts)”. Image available at:

For further information: Kelly Lendvoy, Vice President, Communications & Public Affairs, Arthritis Consumer Experts, 604.379.9898

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New Medicines in Canada’s Public Drug Plans


A recent article from has summarized Canada’s current Public Drug Plans.

The federal government and each of the provincial and territorial governments operate separate publicly funded prescription drug benefit plans within their jurisdiction. Previous research shows that the quality of drug benefits varies significantly between public drug plans. The quality of public insurance coverage for new drugs is an important policy issue because millions of Canadians are dependent on public drug plans for access to their prescription medications, and there are significant health and economic implications associated with access to pharmaceutical innovation. This annual study compares the quality of benefits under Canada’s public drug programs in terms of the number of new drugs approved for public insurance coverage; the time that patients must wait for publicly insured access to new drugs; and the scope of insured access (Full Benefit v. Special Access / other access).

Mark Rovere and Brett Skinner published a report comparing the quality and comprehensiveness of the different Canadian public drug plans. They looked at three metrics:

  1. % of approved drugs by health Canada that are listed on provincial formularies
  2. Average number of days following health Canada approval to list the new drug
  3. % of drugs listed as Full Benefit vs Special Access

Highlights of findings:

  • Of the 464 drugs approved between 2004-2013, on average, only 24.2% were listed and it took 731 days.
  • Quebec had the highest listing rates (40.1%) and shortest listing times (432 days).
  • New Brunswick had the 3rd highest listing rates (28.4%), but the slowest listing time (986 days). Conversely, the NIHB had the 2nd fastest listing times (622 days), but the worst listing rate (17.0%).

– See more at:—s-public-drug-plans–2015-.html#sthash.If9m8g5V.dpuf

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