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What is a Patient Advocate?

A patient advocate is someone who looks out for the best interests of a patient. A patient advocate speaks out in favour of a cause or idea such as ensuring there are more and better treatments and services available.

Governments always have dozens of projects and causes competing for their attention and their funds. It’s a cliché to say that “the squeaky wheel gets the grease,” but it’s also often true.

But an advocate can’t just make noise and expect results. It’s vital to know:

  • what to say
  • how to say it
  • who to say it to
  • when to say it

Effective patient advocates need to be well informed and have clear and plausible requests that are brought to the right people at the right time. Good advocacy can make very important positive change.

Advocacy is also important in shaping public opinion about issues, since public opinion is the major driver of government policy.

Recent changes to laws to ban children from tanning salons and the raising of public awareness about the dangers of tanning salons for everyone are examples of how advocacy has made a big difference for skin safety in Canada.

How to Become a Patient Advocate

Save Your Skin Foundation does many advocacy activities, such as meeting with and sending information to government officials. If you would like to help us with these activities in your area, we’d love to have you join us.

We can discuss the things you can help us with, and provide you with some tips, training and information that will make you an effective patient advocate.

To get started, send an email to natalie@saveyourskin.ca. You can also download a copy of Save Your Skin Foundation’s 2016 Advocacy in Action package here: SYSF 2016 Advocacy in Action

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Together #WeCanICan create awareness of #WorldCancerDay on February 4th!

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A truly global event taking place every year on 4 February, World Cancer Day unites the world’s population in the fight against cancer.

Together, #WeCanICan create awareness of #WorldCancerDay on February 4th!

Get to know some of the people in the fight: https://www.youtube.com/watch?v=2EGkPVLQvx0

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New Medicines in Canada’s Public Drug Plans

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A recent article from CanadianHealthPolicy.com 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: http://www.canadianhealthpolicy.com/products/coverage-for-new-medicines-in-canada—s-public-drug-plans–2015-.html#sthash.If9m8g5V.dpuf

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Sunshine, Vacations and UV Radiation. Know the Facts.

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When we think of sunshine and suntans, we usually think first of vacations. And while most of us, while on vacation, remember to apply sunscreen, we don’t always remember to do this at home. Rain, snow or shine, it’s always important to be sun safe. Skin cancer is the most common type of cancer, even though it is also one of the most preventable.

One in every three cancers diagnosed worldwide is a skin cancer, 80-90% of which are caused by ultraviolet (UV) radiation. The most common sources of UV radiation on the skin are the sun and artificial tanning beds. Over 80,000 cases of skin cancer are diagnosed in Canada each year, more than 5,000 of which are melanomas, the most deadly form of skin cancer.

Canadians born in the 1990s have two to three times higher lifetime risk of getting skin cancer (1 in 6) than those born in the late 1960s (1 in 20)[1]. There are more new cases of skin cancer each year than the number of breast, prostate, lung and colon cancers combined!

Skin cancer is caused by overexposure of the skin to UV radiation, with the most common sources of UV radiation on the skin being the sun and artificial tanning beds.

In 2003 Kathleen Barnard, Founder and President of Save Your Skin Foundation Canada, was diagnosed with stage 4 melanoma. Growing up as an outdoor athlete and enthusiast, she spent countless hours outdoors in the sun. She was unaware of the hazards of the sun and how to protect herself from harmful UV rays. Kathy is now one of few advanced melanoma survivors in Canada, and has made it her mission, through the work of her Foundation, to make others aware of the dangers of the sun and tanning beds, and to educate and promote better awareness of sun safety.

The Save Your Skin Foundation is a national registered not-for profit organization dedicated to the areas of skin cancer and skin disease with a focus on education and awareness, supporting research and ensuring equal and timely access to treatment for all Canadians.

No tan is a safe tan. Enjoy the outdoors and the sunshine, but do it safely. More information can be found on the Save Your Skin Foundation website.

Quick Links:

Sun Safety for Children

Be Sun Smart Infographic

The Facts – Skin Cancer & Melanoma

[1] Canadian Skin Cancer Foundation http://www.canadianskincancerfoundation.com/about-skin-cancer.html

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A Medical Student’s Prospective on the Save Your Skin Foundation

Liz Willsey, MD Candidate UBC Class of 2018, chose the Save Your Skin Foundation for an assignment and we are happy to share an extract of her article with you.

“My interest in melanoma and non-melanoma skin cancer led me to choose the Save Your Skin Foundation for this assignment.  I have a passion for improving skin cancer detection and treatment, and my passion has continued to grow after I spent my summer studying the genotypic and phenotypic correlations of melanoma in Queensland, Australia.  I was particularly interested in learning more about the Save Your Skin Foundation, as it is based locally here in Vancouver, and one of the few organizations in Canada offering support for skin cancer patients.  While working on this assignment, I realized that despite how common skin cancer is in Canada, there is in contrast, strikingly low general public awareness and few resources available for patients battling this disease.  When I was talking with Karran Finlay regarding her involvement in the agency, she emphasized that this was an area that sustained and ongoing efforts could really could make a difference; it is an area where so much is not known, yet early detection and intervention could greatly assist in saving lives. This is something that hit close to my heart and something I strongly believe in.  As a child, I have grown up with a love of the ocean and spending time outside surfing, and this outside exposure drew me early on to the field of skin cancer.  I overheard so many stories of people with worse prognoses simply due to failure to recognize and treat the skin cancer early.  This was further reinforced while I was working on skin cancer research this summer; the importance of diagnosing skin cancer early, treatment and removal, before the malignant stages.  I realized how much a difference this could make in a person’s life.  This motivates me to want to work in this field, and it also motivated members of the organization to want to do this type of work.

I believe it is extremely important for medical students, like me, to be engaged with community organizations like the Save Your Skin Foundation during our training.  It allows them to understand what resources are available to patients and how to appropriately direct patients to the right resources.  Furthermore, it emphasized in me, as a future doctor, the importance to work and partner with community organizations to advocate for patient care.  The Save Your Skin Foundation relies on doctors to help act as advocates for improving funding for treatment at the government level.  This was an invaluable part of my training to reinforce what I need to do at the systemic level once I am a doctor to improve patient care.”

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

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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

https://attendee.gotowebinar.com/register/1418260419678793473

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Professor Dr. Reinhard Dummer Shares Opinion on Successful Takeaways from the Society of Melanoma Research (SMR) 2015 Congress in San Francisco

Save Your Skin Foundation was in San Francisco last week for the Society of Melanoma Research’s (SMR) 2015 Congress. During the Congress, Save Your Skin Foundation met with leading oncologists from across the globe to discuss data coming out of SMR 2015 and what it means for patient care and treatment today.

During our discussions, Professor Dr. Reinhard Dummer shared his thoughts on the significant shift of focus on melanoma research. He explains that Melanoma has attracted the great brains of science today. We have achieved some improvements to patient care and this is in large part due to research results.

Melanoma research matters and the energy going into the first class work being done by researches will result in a better clinical outcome.

Professor Reinhard Dummer is Professor of the University of Zurich and Vice-Chairman of the Department of Dermatology in the University Hospital of Zürich, Switzerland and is a key thought leader in worldwide cutaneous oncology. Currently he is heading of the Skin Cancer Unit and the Clinical Trial Unit of the Department of Dermatology.

He is Board Certified in allergology, clinical immunology, dermatology and dermatopathology.

Professor Dummer’s principal research interests are molecular biology, immunology and immunotherapy of cutaneous malignancies, including cutaneous lymphomas and melanomas. He has published more than 550 papers with a cumulative impact factor of more than 4700. He has been President of the Melanoma Project Group of the Swiss Institute for Applied Cancer Research since 1999, is board member of the Society for Melanoma Research and past President of the International Society for Cutaneous Lymphomas. He is a founding and board member of the European Association of Dermato-Oncology (EADO), and past President of the European Society for Dermatological Research (ESDR).

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Grab Your Shades!

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Exposure to UV radiation over long periods can lead to serious damage to the eyes. Try to protect the eyes all year using sunglasses.

Health Effects of UV Radiation to the Eyes

Too much UV radiation to the eyes can cause short term complaints such as:

  • mild irritation
  • excessive blinking
  • swelling
  • difficulty looking at strong light
  • acute photokeratopathy, also known as sunburn of the cornea or snow blindness.

Exposure to UV radiation over long periods can lead to more serious damage to the eyes such as:

  • cataracts, or cloudiness of the lens
  • cancer of the conjunctiva, the membrane covering the white part of the eye
  • pterygium (pronounced tur-rig-i-um), an overgrowth of the conjunctiva on to the cornea
  • solar keratopathy, or cloudiness of the cornea
  • skin cancer of the eyelids and around the eyes and ocular melanoma.

From 11am to 4pm, when the sun’s rays are the strongest, you can use a hat and / or sunglasses to protect your eyes from UV radiation.

Choosing Sunglasses: What You Need To Know:

  • Wear close fitting, wrap around style sunglasses with a broad-brimmed hat. A broad-brimmed hat can reduce UV radiation to the eyes by 50% but add sunglasses and you can reduce UV radiation exposure to the eyes by up to 98%.
  • Check to make sure the sunglasses protect from UVA and UVB.
  • Check if the sunglasses are suitable for driving.
  • Polarized sunglasses reduce glare and make it easier to see on a sunny day.
  • Some prescription glasses provide UV radiation protection – check with your optometrist. If purchasing prescription sunglasses, make sure they are close fitting and wrap around in style.
  • Sunglasses should not be worn at night as this reduces visibility.

Children and Sunglasses

Since eye damage from UV radiation builds over time, it is important to protect the eyes of children, which are particularly sensitive to UV radiation.

Sunglasses designed for babies and toddlers have soft elastic to keep them in place.It is important to choose a style that stays on securely so that the arms don’t become a safety hazard.

Toy sunglasses do not meet standard protective requirements and should not be used for sun protection.

Some young children may be reluctant to wear sunglasses.You can still protect their eyes by putting on a broad-brimmed hat and staying in the shade.

Protection for Outdoor Workers

Some outdoor workers need protection from flying particles, dust, splashing materials and harmful gases. Tinted eye protectors that protect from UVA and UVB provide sun protection, and reduce glare outside.

Sunglasses, worn together with a broad brimmed hat (if necessary can be worn under a hard hat), can reduce the amount of UV reaching the eyes by up to 98%.

During regular daily exposure, driving and otherwise, sunglass lenses should be dark enough to provide comfort, but not dark enough to reduce vision

During water or snow exposure, it is important to block out blue light. Medium to dark lenses with a grey, green, or brown tint will block out most blue light. Intensive daily exposure, such as outdoor work, requires a higher level of protection from sunglasses.

Daytime Driving: General purpose sunglasses are considered sufficient protection during daylight driving. The industry is self-regulated and has three categories of sunglasses:

  • cosmetic sunglasses with lightly tinted lenses
  • general purpose sunglasses with higher protection levels of all light
  • special purpose sunglasses provide the highest protection, but are too dark for driving

We strongly recommend that you read the labels on various sunglasses and seek the advice of an expert.

Downloadable Sun at Work Resources

Sun at Work Canada Infographic 2015

Sun at Work Canada Overview

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National Sun Awareness Week 2015

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Sun Awareness Week helps to educate Canadians about dangers of excessive sun exposure— and helps to reduce the incidence of skin cancer in the country.

This year’s Sun Awareness Week will take place Monday, June 1 to Sunday, June 7, 2015, and will be marked by a number of events and activities, including:

Even if you can’t partake in any sun awareness activities this week, we hope you will help us to continue helping others by donating today. Every dollar counts. By making a contribution to Hike for Hope, you are helping us make melanoma survivorship a reality.

The biggest message we can get out during this year’s National Sun Awareness Week is that everyone needs to be ‘SUN AWARE‘! Avoiding skin damage from UV rays is the most important thing we can do.

The damage that leads to adult skin cancers starts in childhood and teenage years, as people are likely to receive about 80% of their lifetime sun exposure during the first 18 years of life. No Tan is a Safe Tan.

On the Save Your Skin website, we have listed resources for all topics under the sun (pun intended). Please visit our prevention page to find out how you can stay sun aware this summer. Topics include:

 

 

 

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The hard questions – how I explain a really complicated cancer and treatment to my friends and family

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I’ve just been diagnosed with stage 3 melanoma and begin frantically searching the internet.  Basal cell carcinoma, squamous cell carcinoma, melanoma – all with very different outcomes, under the heading skin cancer.  I finally stumble upon the 10-year survival statistic calculator.  Plug in my age, the site of my melanoma, how thick it is, ulceration and mitotic rate, any spread to lymph nodes or distant sites in the body and I get the magic percentage – the odds I will still be alive 10 years from now.

I barely understand.  This is heavy.  How do I tell people?  The questions start flying.

Why did you get this?

It was probably a mix of sun exposure, using tanning beds and genetics.  There is no such thing as a base tan.  Stay out of the sun and use sunscreen.  

What did your mole look like?

Mine was tan colored, but began to grow.  If there is anything new, growing, bleeding or itchy you should have it looked at and potentially removed.  The classic teaching is asymmetric, irregular borders, multicolored or black, diameter bigger than a pencil eraser, or evolving (A, B, C, D, E).  

You’ve had surgery to remove the skin cancer, it is gone right?  

Well, the parts we can see are gone.  The spot is removed, and 2cm around it to make sure there is no microscopic remnants.  I’ve had lymph nodes removed and there is nothing they can see on the CT scans.  So, for now, I’m “cured”.  I use this word with caution.  The chance that my melanoma will come back is high, 30-60%, so I am optimistic that I will be ok, but I am guarded. 

But it’s just skin cancer?

It depends what kind you have – melanoma is the most aggressive of the skin cancers.  If caught when it is thin in the early stages – removing the spot can be curative.  If it is thick or spread to other sites in the body it is more difficult to treat.

But I have a friend who had (insert cancer here) and they’re ok.

Melanoma is very different from other cancers, like lymphoma or breast cancers, in how we treat it.  It doesn’t respond well, or at all, to chemotherapy and radiation like other types of cancers.  The best treatment is using the body’s own immune system to recognize the melanoma and “attack” it.  In the past few years there have been several new drugs that have come out that are working better than any other treatments we’ve had before, especially in stage 4 melanoma, but they are very expensive for the provinces to pay for.

What kind of treatment is available for stage 3 melanoma that has been surgically removed (resected)?

Currently, some of the options in Canada are drug trials or interferon (which is a controversial treatment).  I opted for interferon.

But you don’t look sick?

I’m on a biological therapy, which is not traditional chemotherapy, and the side effects are slightly different.  I still feel very sick, and need to do the treatment for a year.

Is the treatment working?

Maybe.  We won’t know unless the cancer comes back, or doesn’t.  It is called adjuvant therapy.  As far as the CT scans can see, I was cured from the cancer after my surgery.  But the chance that it can come back (because of microscopic deposits we can’t see) is high.  I hope the interferon does work, but I am cautiously optimistic.

You’ll be ok, right?

Yes.  (Is my usual answer to keep the mood light, what I really should say is):

Maybe.  I was told I have a 50% chance of living 5 more years.  

How do you tell that to your family and friends when you are only in your mid-twenties?  I take all the statistics with a skeptical eye, many of those people included in those statistics are very old, or have other diseases.  Up until a few years ago there were not any good treatments for melanoma, I expect these numbers to change for the better because of our new treatments.  Odds and statistics won’t tell you what your own personal outcome will be – no one can predict that.

One of the most challenging parts of explaining this cancer is that the answer is often “no-one knows for sure”, so I try my best to field questions without making things too complicated or getting into the nitty gritty.  Melanoma is serious and scary, but also at a point where there are lots of new exciting treatments, and with that comes hope.

As a closing note I would like to extend a big thank you to Kathy and the SYSF team for their education and support throughout my treatment.

Sam

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