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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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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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What “Patient Advocacy” Means to Me

Guest post by Natalie Richardson

Until last year I thought the phrase “patient advocacy” was terminology for action that other people take in the distant lots of big city hospitals, or with pickets across Parliament Hill. People throwing big words at medical problems, fighting for the sick or the silenced, major meetings in far-away boardrooms deciding how millions of pharmaceutical dollars would be spent on some ambiguous research study. Things that really didn’t apply to me.

Quickly I have learned that patient advocacy is a term much closer to home, and it is not obscure at all.

It happens all across Canada and the world, and it applies to anyone experiencing a health situation in any form. It is what people do when they bring awareness to a medical occurrence. Whenever a patient, or a family member or health care professional on a patient’s behalf, or a group speaking about a particular disorder lends voice to their concern, they are taking action as an advocate to inform and support, helping patients and their families get access to information and the health services they need.

Patient advocacy helps someone like myself for example, in the methods that a group such as Save Your Skin Foundation uses, to ensure people with melanoma and other skin cancers have access to all of the treatments and health services they need.

Even though the field of melanoma treatment is rapidly growing this day in age, patients still struggle with receiving timely access to new medications as they are discovered, quite often due to budgetary constraints.

Bringing voice to these real and urgent concerns is important in shaping public opinion about issues, since public opinion is the major driver of government policy. By highlighting a subject to a government party or representative(s), there is at least a chance that a portion of funding may be viewed necessary to facilitate the completion or approval of a new treatment or development in care for the given subject, in this case a deadly disease.

There are several ways to carry out patient advocacy, as I have learned from Save Your Skin Foundation (SYSF). Meeting with and sending information to government officials is one piece of the puzzle. SYSF even makes it easy to send a letter to provincial representatives as well as the Federal Health Minister, with form letters available on their website easily downloaded from their “Who are You Surviving For” program page. Every letter matters. Speaking engagements and writing pieces, fund raising walks and social media campaigns also contribute to awareness and engagement.

A melanoma diagnosis no longer needs to be considered an automatic death sentence for Canadians, should we be able to receive equal access to treatments as they come along. And I was able to say that out loud just last week at Queen’s Park; I was able to address members of the Legislative Assembly of Ontario personally, along with Save Your Skin Foundation. Face to face I was able to share my experience with the limitations of melanoma treatment as it stands today. The response was warm and caring, and I feel genuinely hopeful that my small part in delivering this message may help myself and others receive timely and equal access to melanoma treatment in future. I feel that somewhere along the path even one of those representatives may remember my face when choosing their voting direction for funding.

I was fortunate to have received the treatment for my metastatic melanoma that I did, solely due to the randomization process in the clinical trial in which I was enrolled. I had only a 50/50 chance of receiving

the new drug, and I shudder to think I may not be here to write this now, had I not been on the correct side of that coin toss. I got modern immunotherapy merely because I happened to be in the right place at the right time. There is so much growth in melanoma treatment right now, potentially life-saving medicines are just out of reach for myself and other patients.

Advocating to the government for awareness can help close that gap. I have written to our Federal Health Minister, and I have personally relayed my experience to my local elected Minister of Provincial Parliament, and I encourage others to do so as well. Not only on my behalf and that of my daughters, but on behalf of the thousands of other Canadians who fight metastatic melanoma.

All of this effort means the world to my family and I, we actively participate when we can, and we appreciate others who do so as well. Our Oncologists do everything they can, but they are still at the mercy of treatment availability, as patients are.

Efforts in patient advocacy reduce the chances of my falling through any cracks in our health care system. Patient advocacy means someone is looking out for my family.

Natalie Richardson

February 22, 2016

 

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Thank you to Ride to Conquer Cancer Riders

Save Your Skin wants to give a big shoutout to Nicholas Petroff, Madi Tani, and Lydia Mah, for wearing our jerseys in last weekends BC Ride to Conquer Cancer! These riders braved wind and rain, dodging fallen trees and power lines, all in the name of raising money for cancer research! Thank you Nicholas, Lydia and Madi! 

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A mother-daughter team in the Ride to Conquer Cancer

The Save Your Skin Foundation is pleased to introduce two more riders that will be sporting our jerseys in the upcoming BC Ride to Conquer Cancer, mother-daughter team Lydia Mah and eighteen year-old Madison Tani!

The pair have been training since June in anticipation of the two day trek from Vancouver to Redmond, Washington. At 200+ kilometres, this will be the longest cycling trip either of them has ever done. “It will be a challenge,” Lydia told me, “but nothing like the challenge cancer patients face.” The pair are riding for friends who are currently fighting cancer and those who have passed away, whom Lydia believes are “a reminder that we need to continue to fight for a cure”. They are also riding for cancer survivors, such as Save Your Skin Founder, Kathy Barnard- and have already fundraised over $2, 500 each to support melanoma research.

Surprisingly, considering her age, this is not the first time Madison has raised money for cancer research. In grade nine, Madison and four friends raised over $10, 000 for paediatric cancer research by shaving their heads, and donating the hair to be used in wigs. “I’m very proud of her,” Lydia told me of Madison, “Not many kids that age would be willing to do what they did.” While Lydia believes that “everyone has to find their own way” to give back, you can support this awesome duo by helping them fundraise more for melanoma research, cheering them on along the course, or crossing your fingers for good weather!

Click here to access to Lydia and Madi’s fundraising page.

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Photo by Gord Goble as seen in the Delta Optimist

Written by Taylor

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