Wednesday, September 13, 2017

Melanoma Patient Survey for World Mental Health Day

Just a quick blog for my melanoma friends near and far... In preparation for World Mental Health Day on October 10, 2017, Save Your Skin Foundation is researching the topic of mental health associated with a skin cancer diagnosis.  With this research we are going to put together a report to help us help patients as they cope with their disease.  We are also looking to create an informative data poster for use at oncology conferences and events. 

Melanoma is commonly associated with strong feelings of grief, fear, and an overall mental and emotional roller coaster ride.  Melanoma patients and survivors are invited to complete this short and anonymous survey created by patients and staff at Save Your Skin Foundation. 


Thank you for your help!  ...and I will keep you posted as to the resulting report and action we take with the information.  



Survey closes September 25, 2017
(more information about World Mental Health Day here)

Monday, September 4, 2017

Re-group, restore, and re-charge

This summer has been exactly that of the title of this blog: a few months to re-group and recover from an unexpected turn in the roller coaster of life, restore my faith in others - and in myself, plus re-charge my batteries via some changes in pattern.


afternoon siesta in Cuba, just sayin'  :-) 

I am happy to report that I have achieved all of the bucket-list goals I set for myself in the spring, and I have many loving friends and family members to thank for the support along the way.  Life is crazy enough without adding the post-cancer dynamic to it, but with the love of true friends it is possible to get through.  Knock on wood, my health has been great - energy great, losing weight, have full confidence for another good CT scan in September.

Last night the girls and I celebrated a huge milestone with a bunch of new friends; the end of summer vacation brought the last shifts of their summer job(s).  They have worked hard all summer at a high-end restaurant in the next town over, as the resident "Aquatic Technicians," working three nights per week each sweating their asses off in the dish pit.  

There were many times they dreaded going to work and feared the pressure and fast pace, but they stuck with it and buckled down with the team and "dumped it every night!" - I quote the Executive Chef's compliments of them last night LOL  There were several times we all thought they might quit but nope! They persevered, and they are now basking in the glow of a job well done and the power of sticking with a well-laid plan.  This accomplishment is in part to the credit of the Chef's team in the kitchen, they are an inspired group of young entrepreneurs who welcomed the girls with open arms, taught them well, and supported them when they needed it.  This respect in turn earned the girls' desire to do a good job for them and to pitch in extra when the team needed it.  

All summer I watched this transformation in the girls, from anxiety and trepidation to full-on confidence and a lift in understanding of the working world as they experienced what it is to be part of a team that values their effort.  They were inspired - as the rest of the staff are - it was contagious, and as a result it has provided them with a plethora of fun memories of stinky dishwater and singing chefs.  :-)  I am one proud Momma.  *I may or may not also be slightly relieved that our six-night-per-week 10pm drives to Thornbury are over* LOL 

We made lots of memories in addition to work; one notable experience was seeing Green Day in Toronto, now ranked as my favourite concert of all time.  We also traveled a bit, the girls to a friend's cottage, Canada's Wonderland, several shopping trips to the city, and my long-weekend getaway to Cuba.
  
Yes, Cuba.  I, the eternal skin cancer patient, went to sunny Cuba in August.  It's not what you think, rum-soaked resort life beach pool sun sun sun, no... there was some rum LOL  but I got to drink it in the home of friends of my traveling companion, with whom I had previously traveled to Cuba in 2008.  We wanted to get away for a weekend this summer just the two of us, a girls' weekend - and as we priced hotels etc. in the likes of Niagara, my Cuba-expert friend suggested for the same price we could buzz down there for a few days.  And so we did, staying in the city of Moron, at a hostel, living the local Cuban life - and enjoying the local Cuban food (which is amazing, and a FAR cry from what is served at Cuban resorts).  

We went on horse-buggy rides to tour the city, relaxed on the balcony, went to a friend's birthday party, ate avocados and mangoes unlike the puny imports we have here, had carefree afternoon naps (in our blessedly air-conditioned room), generally just took a step back and chilled out... we laughed, we cried, and we talked non-stop, as has been our talent since we met in grade eight.  :-)  It was SO good to re-connect, I really needed that time with my buddy, and I came home feeling strong and empowered, refreshed in exactly the way I was hoping this trip would do.  (more pics below)

This trip is actually the start to a busy few months of travel plans in my household, I am happy to say.  I have always loved to travel and wanted to do more of it, but with the setback of the last three years I thought I was grounded, I had sort of written off my plans for world travel, staying home with young kids and a career taking most of my available energy.  But.... intrepid as I am... I have somehow landed myself in the wonderful position of being invited to travel again, and I am repeatedly proving to myself that I can actually do it.  

Flying to Montreal with Save Your Skin Foundation last September changed my life, and in the year since then I have come to realize the extent of the changes are even still unfolding.  

I am grateful beyond measure to be freshly back into the foray of international travel, Cuba was a good tester.  My next trip is for a September weekend at Whistler, via Vancouver, for a work meeting.  November I have work in Toronto and Ottawa, and in December the girls and I are going on a much-deserved (and long-delayed) vacation to the States - we are going to California!    

The pièce de résistance is in October...  I can hardly even believe I am saying this right now, but... drumroll please...  I am going to Australia!  I have the honour of representing Save Your Skin at the World Congress of Melanoma 2017 and subsequent meeting of the Global Coalition for Melanoma Patient Advocacy.  I will blog more about this in the near future; there is lots to explain, as I have been remiss in my blogging about the work I have been participating in for melanoma patient support in Canada.  My Aussie travel visa is approved, I am working on booking flights, and I will soon choose the sessions to attend at the Congress: I get to select relevant information and data to bring back to Canada from the world leaders in the prevention, diagnosis, and treatment of melanoma skin cancer.  Words cannot express the honour I feel for being given this task.    

So as I daydream about the summer passed and the koala bears to come, the girls are preparing for back to school on Wednesday - there is much organizing of backpacks and choosing of outfits happening upstairs LOL   Tonight we are having an end of summer campfire to celebrate our successes over the past few months, and we will renew our vow to take life one step at a time, and to live every day to the fullest.  


 Sickest taxi I have ever been in
 Casa guard dog my buddy Rosie












Market day in Moron, Cuba


Cheers!  Viva Cuba

April 2008 hot messes ~ August 2017 hot messes part 2 :-)

Thursday, May 25, 2017

CT Scans clear, and blue skies ahead

Two months since I have last written here - that is a record.  Not one I'm proud of, geesh, blog neglect tisk tisk! 

Has certainly been a busy couple of months, being back to work has really kicked my butt.  In a good way for the most part - don't get me wrong - I love my new job!  The people I get to work with are inspiring, caring, intelligent, and the work we do is real.  We are working together to try to improve cancer care in Canada, by way of fighting for patient access to immunotherapy treatments that many people don't know are not currently provided in our country. 

My last post was the night before the conference I helped to plan in Toronto, the IO Network Patient Leader Education Summit March 31 - April 1, 2017.  I was nervous for it; our team had put a tonne of effort into inviting patient advocates from across cancer types to meet in person, to discuss how we can all work together to help save lives.  Long story short, the meeting went well, there were two days of exploratory discussions, and a solid foundation was built for future collaboration.  I will post more about it when we launch the Network website and publish the report from the conference.

From that busy weekend in Toronto, I went directly to my six-month oncology appointments at Sunnybrook: bloodwork, CT scans, exams and consult with the Boss, and another night in a hotel.  Though it had been six months since my last checkup I moved through the routine as if I had just done it the week before.  I fell into quick conversation with my friend the CT Nurse with the twin girls close in age to my own twins, my backpack was light, my wardrobe was CT scanner-approved, and I got a good seat in the D - E waiting area at Odette. 

It was a pensive day for me, as it happened to be exactly three years from the day I first had my troublesome mole removed in Collingwood.  Three years to the day of my first surgery for melanoma, I lay in the CT machine, tears streaming... I walked like a zombie through the tunnel underneath Sunnybrook, and sat quietly waiting for my consult without any desire to read or fidget, my mind racing.

I have been struggling with many three-year milestones the last little while.  Three years since mole excision, three years since needle biopsy, three years since stage IIIb cancer diagnosis, three years since debilitating node dissection surgery, three years since I have become afraid of the sun, three years since my family has been burdened with my lot in life.  

Strange to be thinking this way, trust me I know, and it is not intentional.  Seriously - I can hardly remember my own postal code let alone random dates in April and May.... but these I remember.  

In any case, I got out of the city after that round of appointments, grabbed some pad thai for the girls on the way home, and snuggled in with my puppers to rid my soul of the trauma (and vats of tea to rid my kidneys of the CT contrast dye).  A couple of weeks went quickly by, I finished my post-conference tasks and got back into our home routine of being grateful to be alive (and not dwelling on the three-year mark), plus I had the distraction of facilitating a website upgrade/overhaul for Save Your Skin Foundation. 

 

The Easter Bunny came, and though I was spoiled with flowers and chocolate, I also got a call from my beloved family physician, with the news that my CT scans were clear.  No Evidence of Disease - YASSS!!!  Onward an upward my friends!  I got another six-month pass, therefore I get to cram as much life as possible into the time until September when I go back for the next round of tests.

And cram in life I have been, as evidenced by my lack of indulgence in personal time for my favourite pastime, namely, writing.  This is a particularly busy time of year for my family anyway, with Melanoma Awareness Month being May, my daughters' pending birthday, and the end of school year rush of deadlines, events, and then... high school exams.  

I have become acutely aware of my time spent on various activities, and I have noticed a change in my personal relationships as a result.  Some of my closest friendships have morphed into a sort of shadow of what they were before, and I am powerless to change that at this time.  I have several hand fulls of single parenting and home maintenance, work hours and physical limitations, taxi-ing to teenagers' events and jobs, not to mention my long-standing love affair with quiet alone time.  I believe this will resolve itself with time - I will either get better at it, or my kids will grow up and I will have a clean, quiet, peaceful empty nest.         Love you girls! ;-P

 

In addition to lots of inspiring work-work on my to-do list, I have a few posts planned in the coming days, one being about melanoma awareness month and the efforts I am supporting with regard to patient advocacy.  I am also catching up on spring cleaning and garden work - my beloved canine has (accidentally) compounded the damage done to the flower bed closest to my front door where the driveway gets snow-plowed in winter; poor plants don't stand a chance with him running through, I think I will plant ROCKS.  



I do have additional appointments on the horizon: head-to-toe with my new Dermatologist in July, ongoing thyroid surveillance, and in the second week of June I will be at Sunnybrook to sit on a Melanoma Patient Education Panel.  Will keep you posted!  

Thank you



Wednesday, March 29, 2017

Where I'm At

I should be sleeping but I'm a bit too humming with nervous energy.  For the last couple of months, my colleagues and I have been working very hard on a biggie project which will come to life this weekend.  I'm proud of it, I am excited about it, and I am challenged by it.  

The better portion of my waking hours lately have been spent helping to plan an event at this beautiful location in downtown Toronto, St. James Cathedral Centre:

http://www.cathedralcentre.ca/

It is a beautiful space: that glass-walled area built onto an historic property which boasted one of the largest buildings in the city, in the late 1850's.  And in it this weekend I will be able to witness first-hand a dream team of experts discussing cancer care in Canada, and how it can be improved.   

Ever since I was lucky enough to receive immunotherapy treatment post-surgery for metastatic melanoma, it has been pretty high on my list of good things to have.  I received it via clinical trial, which is the "lucky" part.  The fact that immunotherapy is not necessarily available to Canadian cancer patients is a complicated dilemma, and one that I will continue to bring attention to.   

This Friday and Saturday will mark the inaugural Patient Leader Education Summit, hosted by the Immuno-Oncology Network for Patient Organizations.  

Which means: a group of concerned patient advocacy groups (such as Save Your Skin Foundation, Lung Cancer Canada, Kidney Cancer Canada, and several more) have invited a whole bunch more concerned patient advocacy groups to join them in a discussion and working session as to how we can all work together to gain better access to treatment for Canadian cancer patients across all cancer types (pan-tumour).  

It is fascinating.  There is so much to it all... I had no idea.  The amount of work that patient advocacy groups go to for patients is huge, and not always obvious.  I knew they supported patients in the day to day dealings of a cancer diagnosis, but I did not know the magnitude of the scientific and political aptitude they require in their artillery in order to represent their patients.  

I'm going to stop talking now, and leave the rest of the announcement to the experts.  Please read the press release announcing the impressive list of presenters and panelists who will be involved in the Summit along with more than two dozen patient advocacy groups, it gives a good explanation of what I will be doing tomorrow (travel and prep day) and Friday and Saturday, the conference:





TORONTO, March 27, 2017 /CNW/ - The Immuno-Oncology Network for Patient Organizations today announced its inaugural Patient Leader Education Summit, scheduled for Friday, March 31 to Saturday, April 1, 2017 at the St. James Cathedral Centre in Toronto. The Summit will bring together some of Canada's leading patient advocates in oncology for a two-day meeting intended to educate and identify solutions to expand access to cancer immunotherapy treatments.  


"Cancer immunotherapy medicines have been one of the greatest advancements in cancer treatment, allowing patients with metastatic and advanced disease a real chance of survival, and I am living proof of this reality," says Kathy Barnard, Founder and President at the Save Your Skin Foundation. "Now, we must unify the patient voice and empower patient advocates and patients to be fully engaged in healthcare decision-making, to work together with all the stakeholders involved towards solutions for a sustainable system, and to ensure that cancer patients have access to innovative cancer therapies."  


A highlight of the event will be a discussion about the landscape of cancer therapy today and a look at the future of cancer therapy led by world-leading cancer immunotherapy researcher Dr. John Bell from the Ottawa Hospital. Dr. Bell will be joined by renowned medical oncologist Dr. Marcus Butler from the Princess Margaret Cancer Centre, University Health Network, where he is also the director of the immune monitoring laboratory.


"Cancer immunotherapy is a class of treatments which stimulate a person's own immune system to target and attack cancer cells," says Dr. John Bell. "Right now, immunotherapy treatments have been used in patients with melanoma, lung and kidney cancers, and research continues to extend their use to include different types of cancer. The possibility for immunotherapy has yet to be realized. We also continue to evolve our research in other areas of care, as we know immunotherapy won't work for everyone. Having a wide range of options for patients continues to be important." 


"As the landscape in cancer treatment evolves to include cancer immunotherapy and other innovative treatment options, medical professionals have a responsibility to collaborate with patients and patient advocates to meet the current and future needs of patients," says Dr. Marcus Butler. "If we work together, we have the potential to improve access to treatments, companion diagnostics, and supportive care and, most importantly, ensure the highest safety and effectiveness of care for everyone."


Summit topics will include the importance of taking a patient-focused approach to care, a panel discussion about the role for patient advocates in the regulatory process, and issues of access to cancer immunotherapy and innovative treatments. The group will develop an action plan that will identify tangible areas of improvement in cancer care delivery. 

The event will feature speakers offering diverse perspectives and opinions based on their experience, including:

  • Dr. Marcus Butler, Medical Oncologist, Princess Margaret Cancer Centre, University Health Network
  • Dr. John Bell, Researcher, The Ottawa Hospital
  • Monette Greenway, Principal & Co-Founder, Precision Rx-Dx
  • Imran Ali, Senior Manager, pan-Canadian Pharmaceutical Alliance (pCPA)
  • Scott Gavura, Director, Provincial Drug Reimbursement Cancer Care Ontario (CCO)
  • Alexandra Chambers, Director, pan-Canadian Oncology Drug Review (pCODR)
  • Marie Hotte, Scientific Coordinator, Institut national d'excellence en santé et en services sociaux (INESSS) via video
  • Heather Logan, Executive Director, Canadian Association of Provincial Cancer Agencies (CAPCA)
  • Dr. Reiner Banken, Senior Fellow, Institute for Clinical and Economic Review (ICER)
  • Joanne Castonguay, Research Director, Institute for Research on Public Policy (IRPP)
  • Dr. Femida Gwadry-Sridhar, Founder & CEO, Pulse Infoframe
  • Ryan Peck, Executive Director of the HIV & AIDS Legal Clinic Ontario (HALCO)
  • Martine Elias, Director Access, Advocacy & Community Relations, Myeloma Canada

About the Immuno-Oncology Network for Patient Organizations 
The Immuno-Oncology Network for Patient Organizations emerged when several patient organization leaders from across Canada began to discuss the needs for a collaborative strategy focused on access to cancer immunotherapy treatments for patients in Canada. The Immuno-Oncology Network for Patient Organizations is dedicated to raising awareness of the needs of cancer patients and their families. Our goal is to work together to promote greater education and understanding of therapies to ensure that Canadians have equal, timely access to these therapies, companion diagnostics, and supportive care.


Steering Committee members of the Immuno-Oncology Network for Patient Organizations include the following:

  • Kathy Barnard, Save Your Skin Foundation
  • Canadian Cancer Survivor Network
  • Heather Chappell, Kidney Cancer Canada
  • Annette Cyr, Melanoma Network of Canada
  • Martine Elias, Myeloma Canada
  • Elizabeth Lye, Lymphoma Canada
  • Christina Sit, Lung Cancer Canada
  • Barry Stein, Colorectal Cancer Association of Canada
SOURCE The Immuno-Oncology Network for Patient Organizations


For further information: Kate Hanna, Public relations consultant, 647-962-9948, katehanna@hannacommunications.com; Sabrina Hanna, Managing Director, Immuno-Oncology Network for Patient Organizations, 514-972-0031, Sabrina@saveyourskin.ca




Monday, March 6, 2017

Top 70 Melanoma Blogs - blog.feedspot.com - WOW! Thank you

I woke up to a poignant surprise today - my little blog was named #38 in the top 70 melanoma blogs and websites worldwide! 

I didn't know such a list existed, I simply write (whine) about my experience with skin cancer, and I read (alot) about others' experiences with skin cancer.  I feel a generous sense of community when I identify with others in my shoes, and I have made many friendly and supportive connections in the almost three years since I hit the internet post-metastatic-melanoma-diagnosis.   

I feel like I know many of the others on this list today, I read their blogs and I follow their journeys.  They help me in ways they don't even know.   So now to be named among them is an honour I can't even describe.

Please check out this blog and the list of experienced melanoma SURVIVORS living with the disease.  I guarantee each one will inspire and inform you, they will lift you up and they will teach you.  If you want to know anything about melanoma skin cancer, this is the list for you:

http://blog.feedspot.com/melanoma_blogs/

Thank you so very much Feedspot.com, for helping us all to share awareness of this serious skin disease.

A little by-product of making lemonade out of the lemons life handed me:

http://blog.feedspot.com/melanoma_blogs/



http://blog.feedspot.com/melanoma_blogs/

Saturday, February 4, 2017

Hug a cancer survivor on #WorldCancerDay

February 4th is recognized as a day to commemorate those who have lost their battle with cancer, as well as to give hope and support to patients, their families, and survivors of the various forms of the disease.  World Cancer Day aims to save millions of preventable deaths each year by raising awareness and education about the disease, pressing governments and individuals across the world to take action. 

Claire asked me if we could do a photo for World Cancer Day again this year, and I was touched, I appreciate she wanted to celebrate this small feat with me today.  Here is her inspiration (and skillful photo editing):

(and on my wrist yes, is my new tattoo)

For me personally, it is a day to reflect on what is important to me, what I have accomplished lately, and how I can achieve my goals for the future.  It's also a good day to write a bit - I am tucked away in the master suite with pen in hand.  It's been a while... very busy few months being back to work and all; I'm still feeling my way around the balancing act which is life (most days thinking I will never make headway on that one). 

I've also been battling a severe sinus and ear infection for almost a month, including 15-day course of antibiotics, and - if you can imagine - it has made me even more cranky and anti-social than usual.  Not possible you say?  HA - take it from me, yes, its true.  

  
Unfortunately, one side-effect of my thyroidectomy is all the cancerous lymph nodes that went with it.  Like, literally went... they were removed.  That means my body is missing a section of it's lymphatic system, which moves stuff around, namely bad stuff that needs to get away from an infection in order for it to heal.  This is actually my second ear infection since August; I was not prone to them before, but now I have to be careful of any infections from the neck up. And well... from the neck down.  

It seemed that my super-boosted immune system (from the ipi treatments for melanoma) was warding off everything else too - for almost two years, I hadn't had so much as a sniffle.  Now I worry that it has worn off, is that a thing? and what does that mean for my melanoma?  Will it come back like the cold/flu?  My Mom says I'm just getting old, somehow that is comforting - before cancer I never thought I'd say that.


I'm happy though, to report that my kiddos are well.  They survived the first semester of grade nine in a new school; they have almost straight A's and a gaggle of new friends, plus unflagging spirits ready to tackle anything - everything - that comes their way.  They have been very helpful in the past few months as we have all been adjusting to my every whim, even though they have been fighting challenges of their own.  Don't worry, they are healthy, it's just some of the other stuff can be overwhelming; we all know it's not easy being a teenager. 

They still hold the philosophies reflected in our photos from last year's World Cancer Day, Scott too... I don't know how they all put up with me:



Happy New Year everyone, may 2017 bring you peace and happiness.  xoox

http://who.int/cancer/en/

http://www.worldcancerday.org/about



Friday, December 16, 2016

Column - Meaford Express Simcoe.com December 2016 - The Giving Season for the Chronically Ill

Holiday giving doesn’t have to be an expensive gift; the most precious experience your friend will cherish is the sense of relief and support that you have given them.  Merry Christmas everyone… and thank you, from the bottom of my heart.

(that is the ending from my column this month. I was too wordy.... imagine! ;-) )

Please click here to see this column in the Meaford Express.

Two years later, the love and support that still surrounds my family and I is very truly appreciated. 

Thank you xoxoox

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

Wednesday, November 23, 2016

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




http://www.saveyourskin.ca/news/important-new-cancer-treatments-approved-by-health-canada-marred-by-major-provincial-reality-disconnect-for-patients/


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