A pill can turn a life around

I’m alive because I take daily cancer-fighting pills. Would you give 10 minutes to help people live? Please send an email asking for funding for a lung cancer pill. I put the email I sent below for an example, so it’s very fast & easy for you to cut and paste it and make it your own. Details below!

Let me tell you about my friend Patty Watkins. In 2014, Patty was in excellent shape. Her son’s graduation was just around the corner and she was looking forward to it. One day she experienced a burning feeling in her leg, so went in to get it checked. She awoke after surgery to learn that she had lung cancer and only a couple of days to live. “You’ll never take Patty home,” the doctor told her husband. They called their children to come so they could say their goodbyes.

Patty was determined to live long enough to attend her son’s graduation. Biomarker testing revealed that Patty had ROS1, a rare kind of lung cancer which is treatable with a pill called Crizotinib.

That turned Patty’s story completely around! Patty is alive today because she takes daily cancer-fighting pills!

Patty lives every day. She is a powerhouse! Here are some of the things she has done while on Crizotinib…

Patty rode a camel, was baptised in the River Jordan, floated in the Dead Sea, went to Paris (and when her hotel was under siege during the Paris attacks, she crawled to the hotel basement on her belly!), saw her daughter marry, celebrated her & her best friend’s 60th with a White House tour, and walked many 5K’s for lung cancer research!

Patty rappelled down a 20 story building to raise money for research! Way to go, Patty!

All this because she was tested, and treated for ROS1 lung cancer with Crizotinib! Patty Watkins is alive and well today thanks to Crizotinib! She’s also now a grandmother, and loves spending time with her cute grandson!

In many places, doctors don’t test for ROS1 lung cancer, so people are dying not even knowing there are pills they can take to fight their cancer. People don’t always get the opportunity to live like Patty does.

In Canada, some hospitals test for ROS1 and some don’t. Some provinces fund Crizotinib and some don’t. We are working for change!

Right now, I’m asking for your help to get our province (Ontario) to listen and start funding Crizotinib for people who have ROS1 lung cancer. Would you please support this important work through social media, and/or sending an email. Below, for an example, is the email I sent. Feel free to adapt it to suit you. You don’t have to live in Ontario to help, but if you do live in Ontario, please mention where you live, and if you are emailing your MPP, please indicate they are your MPP and include your address.

This is a grass roots movement supported by some people with ROS1 lung cancer (including Christine Wu), other advocates (including MaryAnn Bradley and Andrea Redway), and Lung Cancer Canada. LCC and several oncologists have sent a request letter, the link is in the email below. Together our voices amplify this message, and will help people get cancer-fighting pills to help them live longer and better, like Patty.


Dear Hon. Christine Elliott, Minister of Health,

I am a lung cancer survivor who lives in Ottawa and is treated at The Ottawa Hospital. I would like to request a meeting to discuss the funding of Crizotinib for ROS 1 lung cancer patients and survivors in Ontario. 

I was diagnosed with stage 4 lung cancer in 2013, and I know first hand the difference Crizotinib can make. After chemotherapy, Crizotinib offered much better quality of life along with the freedom to take it at home. Crizotinib kept me alive long enough for other treatments to become available which have kept me alive to experience milestones like my three children all becoming teenagers, and my eldest starting University.

It matters to me that all others who could benefit from Crizotinib be given the opportunity to live longer and better.

Some facts:

  • Crizotinib for ROS 1 received NOC November 2017 
  • It received a positive PCODR recommendation June 7 2019. 
  • The PCPA (pricing) negotiations are complete.  
  • Provinces across the country have started to cover it including BC, SK, QB, NL, NB. 
  • It fits in with provincial pandemic plans (including ONTARIO) to keep patients out of hospital as it is an oral take home medication. 


This drug is vitally needed as a treatment for ROS1 positive lung cancer patients. Here is a link to a letter from Lung Cancer Canada written in June 2020 to Angie Wong, which outlines the case for funding.  To date, there has been no response. 

https://www.lungcancercanada.ca/LungCancerCanada/media/Images/Crizotinib-for-Ros-1-ON-FINAL.pdf


I look forward to hearing from your office and discussing this issue with you.

Warm regards,
Jill 

Jill Hamer-Wilson  BEng, BEd, MTS      

613-325-5695

www.ThroughtheValley.ca

Lung Cancer Survivor Advocate

Canadalung@gmail.com


Please send an email to the Ontario Minister of Health, the Honourable Christine Elliott christine.elliott@pc.ola.org, and also cc me canadalung@gmail.com.

Please don’t hesitate to reach out if you have any questions, concerns or comments.

I addressed this email to the Minister of Health, and cc’d in France Gélinas, (NDP Health Critic), John Fraser (Liberal Health Critic), Karen Hughes (Deputy Minister), and Robin Martin (Parliamentary Assistant). I also sent personalised emails to several others, including my own Member of Provincial Parliament. (Email addresses: christine.elliott@pc.ola.org fgelinas-qp@ndp.on.ca karen.hughes@ontario.ca jfraser.mpp.co@liberal.ola.org)

If you live in Ontario, please also email your local MPP and mention your address so they know they represent you. It’s easy to find your MPP:  https://www.ola.org/en/members/current

Please cc me: canadalung@gmail.com

Please also reach out to the Health Minister on social media if you are able.

Twitter: https://twitter.com/celliottability?s=21

Facebook:https://www.facebook.com/ChristineElliottON/

Instagram: https://instagram.com/celliottability?igshid=157mo9u4heruz

Please tag me, and include #HOPEUNiTES Thank you!

THANK YOU SO MUCH!!! I am very grateful that you are doing this! I love Patty and others with ROS1 lung cancer, and I very much want all to live longer and better with Crizotinib. Your participation means a great deal.

A pill can turn a life around. Thank you for acting to turn people’s lives around.

Three More Reasons to Hold onto Hope

In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.