Thursday, November 24, 2016

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. 

http://www.saveyourskin.ca/support-resources/downloadable-resources/

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 
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

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