In response to this press release last week, I wrote below article for HuffPost: 

This article was originally called "Canadians Need to Know They May Not Get Available Cancer Treatments" but I digress....

Patient Advocacy 101

eeeek - when I first explored the "advocacy" option of my melanoma journey, it wasn't entirely intentional... and I was intimidated, to say the least.  I had to read and re-read the advice posted online and really think it through.  

I was sure I needed to have my voice heard (and my family may or may not have been tired of hearing it!!); I had to go big... just a bite at a time, but bigger.  

I had already asked as many Oncologists as I could get my hands on about my disease, and how it may affect my future, and that of my kids (who, for the record, now have the dubious distinction of a close family history of cancer. For the rest of their lives they have to answer those questions when asked about their family medical history.)

I am starting to get more comfortable with advocacy, but the most important thing I have learned about it is that any little bit I do to contribute to it is helpful.  Every little bit helps, as with everything worth working toward in life. 

Last February I spoke at the meeting Save Your Skin hosted at Queen's Park, and I was nervous.  But I spoke about what I knew.  I was sure about what message I wanted to convey to the people in the room that night, it was my story after all, my family and I had lived it.  

Following that meeting I wrote a letter to Federal Minister of Health: Hon. Dr. Jane Philpott - thankfully I had help writing that letter! (I'm a decent writer, but not the political kind) It was my story, but with the background information and format needed to support it's credibility.  

A few months later I wrote another letter, to Dr. Eric Hoskins, Minister of Health in Ontario.  And just yesterday I attended a conference at which many patient groups were represented, and I learned even more about how I can get help trying to get my needs met, as a cancer patient in Canada.  

The painful memories of my experiences not that long ago motivate me to spend a bit of time sharing the reality of the situation.  And I have been hearing even more painful stories from across the country about Canadians that are not able to get access to cancer drugs that have been approved for use in Canada, but are not funded in their province. 

That's a thing.  That happens.  These days.  And you never know when it may affect you until you're right smack dab in the middle of it.  

The reason I am telling you all of this now?  RIGHT HERE:  this excerpt from yesterday's press release by Save Your Skin Foundation:

"In June 2016 the first PD-1 immuno-oncology treatment for melanoma, Keytruda, was listed to the provincial formulary with a recommendation to fund either Keytruda or Yervoy, but not both – so that anyone having received either of these treatments through standard treatment or in a clinical trial as of June 2, 2016 would not have access to any other immuno-oncology treatment, regardless of having two distinct mechanisms of action. Meaning any patient who does not respond to one immunotherapy has no opportunity to access a second line therapy option (in the BRAF wildtype population)." 

:-(

It's not as hard as I thought it would be to share my opinion with the leaders of our country and as such, our health care system.  Please... take it from me (one who always backs away from politically-charged conversations) - if I can do it?  YOU can do it.  

Should you feel inclined to take a few moments to email - doesn't even have to be snail mail - our provincial and federal leaders to ask for the treatments that I needed but received only through clinical trial, or... really, I have been spoiled enough with all this surviving stuff... how about an Ask for those patients who have yet to be as fortunate as myself: those on the wrong side of the coin toss, the gene mutation, or the province borders. 

It is made very easy here! 

I will list the individual resources so you can skip more of my blabbing on.  But for those who might like more description, check it out below this list:

1. Send(with edits) this letter to  Federal Minister of Health: 

Hon. Dr. Jane Philpott

House of Commons Ottawa, Ontario Canada K1A 0A6 

TO: Jane.Philpott@parl.gc.ca

2. Send same letter(with edits) to your Provincial Minister of Health.  Find your province here.

3. Read this  

4. If you are able to do more? Check out the details below:

Patient Advocacy – How YOU Can Help: 
Patient Advocacy Tools and Templates

We urgently need your help. Now is a critical time to push for provincial and federal support for equal timely access to new treatments for all melanoma patients so that no Canadian is left behind.

We urge you to consider writing to your Federal Health Minister and to your local government representatives to convey a request for support. We have also included this template letter, as well as links to appropriate government contacts, making it easy to find out who your provincial and federal representatives are.

The Save Your Skin Foundation has assembled materials to assist you to do the following:

1. Write to your Members of Parliament to share your thoughts on this issue or to request a meeting – contact information for local government members can be found at: http://www.parl.gc.ca/Parliamentarians/en/members
2. Write to your MLA/MPP asking that he/she write to the Minister of Health (click here to download sample letter)
3. Prepare for and have a meeting with your MLA (talking points and fact sheet)
4. Report back the results of your MLA meeting – contact us by email or phone any time
5. Write a letter for your MLA to send to the Minister of Health
6. Write to your provincial Ministers of Health -(Click here to find out who your provincial Minister of Health is: http://healthycanadians.gc.ca/health-system-systeme-sante/cards-cartes-eng.php)
7. Write to the Minister of Health – contact information can be found here: Federal Minister of Health: Hon. Dr. Jane Philpott – https://goo.gl/MB1XtI

If you’d like a general overview of patient advocacy, you can also download our 2016 advocacy outline by clicking here.

Thank you for taking the time to become involved on behalf of everyone affected by Melanoma across Canada.

Together we can and will make a difference!

Let your voice be heard via social media as well!

Tweet or post to share your message to accounts such as @HealthCanada using hashtags like: 

#FairChance

#MelanomaTreatment #FightMelanoma #HealthCanada #PublicHealth

#CureMelanoma #MelanomaSurvival #PatientsVoice #PatientsFirst

Facebook: 
www.facebook.com/SaveYourSkinFoundation/
www.facebook.com/FondationSauveTaPeau/

Twitter:  
@saveyourskinfdn  
@sauvetapeau

Important new cancer treatments approved by Health Canada marred by major provincial reality disconnect for patients - Press Release 22-Nov-2016

Patient access to innovative new cancer treatments seriously limited by provincial funding recommendations across Canada

Press Release body:

TORONTO, Nov. 22, 2016 /CNW/ - Health Canada recently conditionally approved an advanced new treatment option for Canadians battling metastatic melanoma. The treatment consists of a combination of two immuno-oncology agents: Opdivo + Yervoy, the first combination in the immunotherapy space. While many applauded the approval, numerous patients and doctors are holding their breath to see what provincial recommendations will come if approved for reimbursement by the pan-Canadian Oncology Drug Review (pCODR). Across Canada, cancer patients are being restricted to access to innovative new treatments due to funding recommendations made by health technology assessment agencies and provinces. Over the past year, patient access to some cancer treatments approved by Health Canada have been seriously limited as the result of these recommendations.

In June 2016 the first PD-1 immuno-oncology treatment for melanoma, Keytruda, was listed to the provincial formulary with a recommendation to fund either Keytruda or Yervoy, but not both – so that anyone having received either of these treatments through standard treatment or in a clinical trial as of June 2, 2016 would not have access to any other immuno-oncology treatment, regardless of having two distinct mechanisms of action. Meaning any patient who does not respond to one immunotherapy has no opportunity to access a second line therapy option (in the BRAF wildtype population).

 

Many more immuno-oncology drugs are currently in review, including a number aimed at treating non small cell lung cancer, the number one cause of cancer related deaths in Canadians and women. 

The Save Your Skin Foundation, along with other patient advocacy groups, are exceedingly concerned about what recommendations these approvals will come with and how they will affect access to important, potentially lifesaving therapies.

Kathy Barnard, Founder of the Save Your Skin Foundation, owes her survival of metastatic melanoma to Yervoy, which she received in a clinical trial, after failing on all previous treatments. "Finally, after 30 years, we are seeing innovative treatments that are helping patients live longer, but when provinces make funding recommendations that limit treatment options for patients, we are no further advanced than we were 30 years ago when no treatment options existed at all," says Barnard. "We're hearing from patients all over the country who are not getting the drugs they need and they don't know why."

It is not known yet what the funding recommendations on this new combination drug will be, however, currently in Canada, Yervoy, a CTLA-4 checkpoint inhibitor, as a single agent treatment, has now been restricted across all provinces - the only country in the world where this is the situation. 

"With this, we find Canada one step forward and two steps back, leaving some patients without access to the treatment they need. There is a clear lack of transparency as well as a lack of innovation in the approval process that is in stark contrast with the ever-evolving developments we are seeing in the treatment of cancer," expressed Barnard.

Barnard goes on to state that health technology assessment (HTA) agencies, governments and manufacturers must work together with oncologists to find strategies that translate to the best course of treatment for patients. "We need to work together to find innovative solutions that ensure breakthrough treatments are available to all patients, while also reducing time delays, in order to keep our health care system sustainable," said Barnard. "Cancer patients need to have access to cancer drug options, and access needs to be available from within the communities where they live."

About the Save Your Skin Foundation

The Save Your Skin Foundation is a Canadian registered not-for-profit that supports those touched by skin cancer by helping patients to navigate their journey through informed, compassionate care and personalized support to those touched by melanoma and non-melanoma skin cancers. Through programs and outreach, we support education and ongoing awareness about skin cancer, from prevention to survivorship. The Foundation also acts as a conduit for health care professionals and patients in the Canadian health technology assessment and reimbursement landscape. Please visit www.saveyourskin.ca for more information.

SOURCE Save Your Skin Foundation

For further information: Save Your Skin Foundation Media Relations: Karran Finlay, 1.778.988.8194, karran@saveyourskin.ca, saveyourskin.ca

About the day I got to thank MY melanoma Heroes

On this blog I have repeatedly touched on the massive feeling of gratitude I have for the family and friends, supporters, and community members I have been so blessed to have around me through this skin cancer battle.  My kiddos and I could not have survived this ordeal without you.  I believe that is one reason why I feel so strongly about supporting others in the melanoma community: to give back in a way that others may need, in case they are not spoiled rotten with loved ones, as I am.  

The awareness campaign #MelanomaHeroes speaks to me on an even more personal level though, as it provides the opportunity to publicly thank the two people who make my life worth living: my daughters.  Claire and Cass, my right-and-left-hand women.  My heroes, melanoma and otherwise.

Not only did they save my life, by encouraging (forcing) me to show that terrible mole-gone-bad to our doctor, but they continue to rescue me in little ways every day.  

The loving support they share, with me and with everyone they meet, is a beacon of light on an otherwise very dark journey.  

Thought I would share with you some candid photos of our day in Toronto, behind the scenes making the #MelanomaHeroes video.  It was a very emotional experience for us, but in our typical three-musketeer style we managed to goof around and have a totally fun day.  We laughed..we cried... and I learned a couple of things!

1.  Claire admitted, in her interview on camera (although it does not show in the video) that the reason she went with me to so many of my appointments in 2014-2015 was so that she could hear everything that was going on.  Here I thought she insisted on accompanying me because she wanted to encourage me to be strong, or she didn't want me to be lonely, or to maybe get some of that delicious mac n cheese at the Druxy's in Odette LOL  and it was those things as well, but the main reason was that she demanded complete transparency; she wanted to see my Oncologists too.  Fair.  Wow.. OK   At the outset of my diagnosis my very experienced family physician and I together decided that we would be open with the kids.  It's different with every family, but for ours it is better to explain things and be honest about what is going on.  

2.  I learned that a 14-year old young lady can still quickly humble her clown of a mother by spitting out gum in said mother's hand that appeared at said child's mouth by habit, even though the room was full of artistic professionals trying to film us for a serious topic.  Someone giggled from the back - "Ha Claire you just got MOM'd!!"  

3.  Film studios are very cool.  And the white-painted-out rounded corners are super trippy to walk around on.  And green screens are really green (we didn't use one, but on the tour we got to see an actual studio in which car commercials are filmed in Toronto).  

Here are some photos from this very powerful day.  Thank you to all involved - A and team - we heart you.  

 

Oh yes and one other funny moment from the interview-style filming session, my gum-spitting daughter was being a bit smart-alecky before I pulled out the letter that I had written to surprise them with a detailed thank you.  

I received the cue from the director, which we had pre-planned: nearing the end of our interview, he said "is there anything else you can think of to say?"  

...I paused for a moment, gathering my wits for what I knew would be an emotional moment.  And Claire sassed "YAH Mom - you better think of something good!"  haha 

Little did she know, I did think of something good!  And the look of surprise on her face was perfectly captured in the video.  I loved it, couldn't have worked better.  :-)

Click here to watch the video: