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Giving Tuesday is November 28, 2017

Happening the Tuesday right after Black Friday and Cyber Monday, two major days for commerce, GivingTuesday is a national day dedicated to giving. It’s a day when Canadian charities, businesses, and individuals come together for one simple purpose: to celebrate giving and give back.

At Save Your Skin Foundation, it is important that our donors know that every dollar they donate goes straight toward helping to meet the immediate needs of melanoma and non-melanoma skin cancer patients, as well as spreading awareness about this preventable disease.

Everything we do is led by the needs of the patient. The cancer landscape is anything but straightforward. Canada’s healthcare system is complex with many decision makers at federal and provincial levels that are responsible for the healthcare services we receive. We work to ensure the patient voice is heard and patients receive the best possible outcomes.

New treatments, lengthy drug approval processes, and differences in provincial healthcare funding mean patients sometimes fall through the cracks. We are there to support them and help them navigate their journey. We provide personalized support to patients to access the medical and financial assistance they need.

Help us continue to push forward the eradication of this deadly disease. Help us give Canadian melanoma and non-melanoma skin cancer patients the best chance of survival. Be part of something that matters.

DONATE

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Avelumab Survey for Merkel Cell Carcinoma Patients

(Note: blog post updated November 14, 2017)

Save Your Skin Foundation, in collaboration with Canadian Cancer Survivor Network, submitted the patient perspective on Avelumab (Bavencio) treatment for Merkel Cell Carcinoma, a rare form of skin cancer.  Thank you to all patients and caregivers touched by Merkel Cell Carcinoma, who shared their experience with this treatment.

The results of this survey were submitted in our patient evidence study to the pan-Canadian Oncology Drug Review (pCODR) on Oct. 24, 2017.

To read the submission, please click here.

 

For more information about Canadian Cancer Survivor Network, click here.

(image credit click here)

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Drug Pricing Policy Summit 2017

On November 15 & 16, 2017 was the 2nd annual Drug Pricing Policy Summit in Toronto, Ontario.  Varied patient groups joined the Canadian Cancer Survivor Network, Schizophrenia Society of Ontario, and Save Your Skin Foundation to discuss:  Drug Pricing Policy in Canada: Measuring Progress and Making Our Mark

This year’s Summit built on the inaugural 2016 Summit with updates from across the regulatory, public and private policy environments. In addition, the 2017 Summit presented different views on drug pricing policy in Canada, including perspectives on value-based healthcare with a focus on patient outcomes and putting the patient at the centre of the process. Panelists included leaders in the public and private payer environments, pharmaceutical industry and prescribers.

To read more about the background information, visit the Canadian Cancer Survivor Network website for the following link and more: Click here to view a description of bodies involved in drug pricing policy in Canada.

To learn more about the DPPS Working Groups or to inquire about getting involved in them, please email:  DPPSWorkingGroups@gmail.com

Updated December 19, 2017:

We are proud to share the reports from the 2017 Summit, in English and in French. Please click on images below to read the reports: 

              

Recordings of the sessions that occurred over the two days are also available via youTube, to view the collection please click here

 

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The following webinars were presented prior to this year’s Summit, detailing updates on the climate of drug pricing policy in Canada.

October 18, 2017, pan-Canadian Public Health Systems : The Basics
Presenters: Wayne Critchley, Louise Binder

Please click here to watch the recording of this webinar

This webinar will provide a broad conceptual blueprint of federal and provincial/territorial public health policy structures across Canada, describing the legal framework, government responsibility centres and their mandates for treatment access, with reference to specific opportunities for patient engagement. This is a primer for attendees attending the November 15-16, 2017 Drug Pricing Policy Summit and for others who would like to have a review of these systems for their interest.

November 1, 2017, Health Technology Assessment : What does value really mean for public drug plans?

Presenter: Matthew Brougham

Please click here to watch a recording of this webinar

This webinar will describe the process used by nine provinces and the territories to assess the value of a drug in determining whether public drugs plans should reimburse the drug through their plans. This is called a health technology assessment. It will describe the role and methodology of the Canadian Agency for Drugs and Technologies in Health in leading this assessment for both oncology and non-oncology drugs.

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SYSF Attends ESMO 2017 Congress

September 8-12, 2017, Kathy Barnard attended the ESMO 2017 Congress, European Society for Medical Oncology, in Madrid Spain.  In partnership with the European Association for Cancer Research, ESMO brought cancer researchers and clinicians together to enable collaboration and the exchange of ideas, from the laboratory to the bedside and back. This exciting partnership creates a unique cancer congress in Europe with huge scientific reach and the true potential to improve the lives of cancer patients.

With her, Kathy brought home the latest in news about melanoma and other skin cancers, as summarized in this report: ESMO 2017 Congress – Melanoma Highlights.

View or download the report HERE for details about the following:

Plenary Sessions
Adjuvant dabrafenib plus trametinib significantly lowers risk of death in stage III BRAF V600–mutated melanoma
BRIM8 data shows benefit with adjuvant vemurafenib in resected BRAFV600 positive melanoma
Nivolumab bests ipilimumab as adjuvant therapy in resected melanoma

Article from ESMO Daily Reporter
Practice-changing phase III data in melanoma patients cause excitement at a Presidential Symposium

Links to Press Releases
ESMO 2017 Press Release: Combination Targeted Adjuvant Therapy Doubles Relapse-free Survival in Stage III Melanoma
ESMO 2017 Press Release: Adjuvant Nivolumab Superior to Ipilimumab in Surgically Resected Stage III/IV Melanoma

Poster Submissions

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Melanoma Patient Survey for World Mental Health Day

A cancer diagnosis of any kind takes a toll on the mental health of those who receive it; feelings of anxiety, fear, and depression are common while adjusting to the uncertainty of a new life with cancer. World Mental Health day is October 10, and this year Save Your Skin Foundation is hoping to shed some light on the affects of a melanoma diagnosis on the mental health of patients and survivors.

By taking our survey anonymously, as either a patient or survivor, you will be providing us with insight regarding the need for emotional support among those diagnosed with melanoma, how these needs change in the transition period from patient to survivor, and how to provide the best support possible for anyone in this process.

We appreciate your taking this survey before September 25, and hope that you will share it with anyone you may know who has experienced a melanoma diagnosis. With your help, we hope to improve the ways we address mental health support for melanoma patients.  Stay tuned for the report we will compile from the survey! The survey is now closed, thank you for your feedback. 

Updated October 10, 2017: Please click here to read the report ~ SYSF Survey: Melanoma Patients and Mental Health, 2017

 

More information about World Mental Health Day can be found here.

For any questions or additional information, please feel free to contact us.

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#sunsafechallenge Winner Announcement!

Thank you to everyone who participated in our #sunsafechallenge instagram contest! Here are some of the awesome photos that were shared. Scroll to the bottom to see which post has been randomly selected to win a $100 Shoppers Drug Mart gift card!

      

And the winner is…

Congratulations, @ramonabietlot!

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One of our Favourite Articles from the ASCO Daily News

The American Society of Clinical Oncology (ASCO) 2017 meeting was so full of fascinating panels, abstracts, and articles, that we are only fully catching up now. We’d like to shine a spotlight on a particular article from the ASCO Daily News printed on Sunday, June 4th (on the ASCO website May 25, 2017): “Expert Editorial: Is There an Optimal Dose of Ipilimumab in Melanoma?” by Dr. Jason J. Luke, MD, FACP,  (Assistant Professor of medicine (Melanoma and Developmental Therapeutics Clinics), The University of Chicago).

Discussion of the immunotherapy treatment ipilumumab, or yervoy, has been a hot topic in melanoma discourse since ipilimumab was taken off of the market as a first-line treatment for advanced cases of melanoma. Prior to this, ipilimumab had regulatory approval for the treatment of advanced melanoma; however the trials of a 10 mg/kg dose were deemed to have inadequate safety follow-up, and therefore only the 3 mg/kg dose received approval. The most effective dose of ipilimumab was tested in the phase III CA 184-169 trial, which Dr. Luke outlines in his article. While this trial would suggest that there is no role for solitary ipilimumab in either the 3 mg/kg or 10 mg/kg dose as a first-line treatment in cases of advanced melanoma, Dr. Luke explores the ways in which ipilimumab can still be used in clinical practice and as an investigative tool for future combination therapies.  

The full text of the article can be read here. 

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Download the UV Canada App to Step Up your Sun Safety!

 

   With warm Summer weather approaching, the UV Canada application (available for iPhone and Android) should be a fixture on your phone! UV Canada is a free app jointly developed by the Save Your Skin Foundation, BC Cancer Agency, Environment Canada, and powered by MetaOptima, that allows you to check the current weather and UV Index level of any Canadian city.

The UV Index is a tool for understanding your risk of sun damage on any particular day. While the Summer season is the most high-risk for UV exposure, it is important to check the UV Index and protect yourself accordingly throughout the year, especially if you are participating in water or snow sports, as UV rays reflect strongly off of these surfaces.

The UV Index is a scale from 0-11+, with 0 indicating the least severe likelihood of UV damage. If the UV Index is between 0-2, minimal sun protection is required unless you are near surfaces that reflect UV rays, such as snow or water. Sunglasses are always recommended in bright conditions. A UV Index rating of 3-5 should be met by taking sun safety precautions, particularly during the peak UV hours of 11am-4pm. These may include wearing sunscreen, sunglasses, a hat, and seeking shade. These measures are especially recommended when the UV Index exceeds 6, which qualifies as high risk for UV damage.

The UV Canada app takes customization a step further with the ‘Time to Burn’ feature, which allows the user to estimate how long it would take their skin to burn in a given setting. This time period is assessed by combining the UV level on a particular day, the user’s skin type, the level of SPF they are wearing, and the environment they are in; environment options include desert, snow, grass, city, and water. This is both a useful tool for estimating the user’s need for sun protection and an educational tool for how long skin may take to burn in a given situation.

Below are two sample images from the UV Canada app, depicting two different UV situations. The light rain in Vancouver is accompanied by a UV rating of 3, so minimal risk of UV damage, while the warmer weather in Toronto has a UV rating of 7, necessitating sun safety precautions. The UV Canada app is constantly up to date with the weather and the UV Index throughout the day, making it easy to plan your sun safety strategy this summer. Stay safe!

  

Download the UV Canada app for iPhone or Android.

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Celebrating National Cancer Survivors Day with Patients Who Know: #CancerChanged

Diagnosed with advanced melanoma in August 2015, Lyall Woznesensky has learned that every minute of every day is precious, and he thanks his family and friends for their care and support through his cancer experience.

In time to celebrate National Cancer Survivors Day on Sunday, June 4, 2017, four Canadian patients living with advanced cancer are sharing their stories to help bring awareness to the hope for survivorship that is more accessible in this day and age, due to innovative new medical treatments.  Through documentary-style photo essays, a new campaign called #CancerChanged will bring to life these stories, to highlight hope and survivorship through the lens of Canadian award-winning photojournalists.

 

#CancerChanged gives an authentic glimpse into the lives of people living longer with advanced cancer to foster hope, understanding and peer-to-peer support.  This series of photographs, anecdotes, and video interviews will be shared in the coming days across social media channels, and through the networks of oncology patient organizations which are part of the collective called CONECTed.

“This is a time of change and a time of hope. Cancer patients have been dreaming about hope — and now hope is real.” said Kathy Barnard, Member of CONECTed steering committee and President and Founder of Save Your Skin Foundation, the patient advocacy group that has led the creation of CONECTed.  “New advances in cancer treatment have changed the outlook for many cancer patients. This extended phase is what we call survivorship and it poses new challenges such as how patients transition from a terminal diagnosis to a redefined ‘normal’ life embracing quality time and hope.”  See press release here

Lyall is open about his experience since learning that he has advanced skin cancer, “It’s all about trying to help others if I can in any small way,” he says, candidly, of his participation in #CancerChanged and bringing awareness to melanoma in general.  Recently Lyall was a guest panelist on a webinar hosted by Save Your Skin Foundation: Living Beyond Cancer.  Click here to watch the webinar.

To see more of Lyall’s impactful story, please see his photo essay below.  To see all of the #CancerChanged stories, please visit the #CancerChanged website here.  Click here for more information about CONECTEd, and to read about National Cancer Survivors day, click here.

Lyall was also interviewed for this article in the Winnipeg Sun: Former Bomber Finds Perspective in Cancer Fight

And here:  “The Woz” jumps for joy after tackling cancer, Saskatoon StarPheonix.

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Save Your Skin Foundation in Ottawa

On Monday, May 29, 2017, Kathleen Barnard was invited to attend the recognition of Save Your Skin Foundation in the House of Commons, Ottawa, Ontario, Canada.  Her dedication to patient advocacy was applauded by Member of Parliament Mark Warawa, and supported by a subsequent meeting in the office of the Health Minister.  “Through your efforts Kathy, we are closer to realizing a Canada where cancer is prevented, survived, and cured,” stated Warawa.  Please click here to watch the presentation:

Click HERE to view the presentation on youTube

 

And click here to watch the MP Minute – With Member of Parliament Mark Warawa, and Kathleen Barnard of Save Your Skin Foundation.

 

 

Kathy Barnard with Parliamentary Secretary to the Minister of Health Joël Lightbound , Official Opposition Critic for Health Dr. Colin Carrie, Member of Parliament Mark Warawa.

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