Partnerships beyond Banff

A team of five cancer advocates are excited to announce that the article we wrote was published today!

A year ago today, Diane Manii and I were travelling to Banff Alberta to participate in an international conference for professionals who support people living with cancer.

My goal was to represent people with lung cancer and introduce myself to as many people as I could, kindly challenging them to do more for people affected by lung cancer.

I brought a pile of Canadian flag pins from the office of Catherine McKenna, my elected official. I’d been to her office for pins quite a few times in recent years, and her staff were always generous with pins and pleased to talk about lung cancer with me. Pins are a great excuse to build relationship, near and far. I gave out quite a few in Banff, while telling my lung cancer story to people and asking lots of questions about them and the situation where they work.

I had great conversations with a wide variety of people, including some that I had met prior to the conference. There are so many skilled and caring people working in the cancer world, but the people at this conference – social workers, physiotherapists, psychologists, and the like – asked me way more questions about my family and my cancer journey than most people typically do. I felt cared for as a person, and that was a good gift.

Many people came to hear Diane and me, when we presented about the Ottawa Lung Cancer Support Group. They listened intently as we spoke and asked thoughtful questions afterwards. I deeply hope that many of them have started up lung cancer support groups in the past year. We certainly challenged them to do so. If you want to start up a support group, it’s not hard and there are lots of people willing to help. Diane was an excellent leader who really got us started well, then left us in the very capable hands of Dr. Sophie Lebel when she retired.

For the first time ever, this conference was “Patients Included”, not only incorporating experiences, but also offering five scholarships for people affected by cancer to participate in the full conference.

These scholarships were earned by: Lorna Larsen (@TeamShan Breast Cancer Awareness for Young Women), Karen Haas (@caringcancermom Childhood Cancer advocate mom), Margaret Ng (Brain cancer survivor and wellness worker), Dr. Vicky Forster (@vickyyyf Childhood cancer survivor, cancer research scientist and science writer), and myself (@JillHW lung cancer survivor advocate). It was great to be able to connect with them all!

Vicky and I met when I was looking for a spot for lunch and noticed an empty seat beside her. It was a treat to meet someone so likeminded and engaging. Like me, she is a real people person and connector. We quickly discovered that we were both going to be in Toronto a few weeks later to serve as patient representatives with the Canadian Cancer Society.

We’re excited to share with you this paper about our experiences attending the conference. It is written by all five advocates, and Vicky Forster gave great leadership to the process, putting her connecting and communicating skills to work. Thank you, Vicky!

Research shows that partnerships lead to better research! Thank you to the International Psychosocial Oncology Society, The Canadian Association of Psychosocial Oncology, Dr. Fiona Schulte and Dr. Linda E. Carlson for strongly supporting patient/survivor advocates.

Thank you all for being #team.

You can read the whole article here.

#IPOS19 #CAPO19.

A day in the life of an advocate

Lung cancer advocacy offers a world of opportunity! A variety of sizes and shapes so that everyone who wants to stand up for people affected by lung cancer can find ways to apply best practices to make a difference!

Let me give you a small taste by telling you about my day yesterday, and some of the terrific teams I get to work with …

International Health Advocate Chris Draft called from Atlanta yesterday morning. Great call: inspiring and energising! Team Draft invests in lung cancer advocates: supporting, training, encouraging. Chris is a strategic big picture thinker, always challenging people and organizations to leverage opportunities to do even more good for people affected by lung cancer. #Grateful

Chris Draft (far right) with some of the terrific lung cancer advocates from Australia, the Netherlands, Mexico and Canada at World Conference on Lung Cancer, Barcelona, 2019.

A team from The Ottawa Hospital Cancer Centre is working on a resource package that will go out (on paper and electronically) to people who are newly diagnosed with lung cancer. This project matters because it helps fill a gap in patient care. We are a diverse team, representing all key groups: administrators, nurses, psychosocial oncology, doctors, and survivors. This diversity is important to ensure that the package will be as effective as possible, and that it will actually get to people. I spent some of yesterday working on the letter from survivors that is part of the package.

My awesome oncologist, Dr. Garth Nicholas, who is part of this team (photo taken before COVID-19)

What happens after lung cancer researchers apply for funding? A team of reviewers invest many hours carefully reading their research proposals, discerning strengths and weaknesses and evaluating, then gathering to discuss which they will recommend to receive funding. I spent time yesterday reading a research proposal as part of a review process.

The Patient Representatives Team of the Canadian Cancer Trials Group (CCTG) met (online) yesterday, so (among other things) I got to hear research updates from some amazing people, and present what’s happening with the lung site. Clinical trials are getting back on track after some things had slowed down due to COVID. Good news! Research matters!

The Canadian Cancer Research Alliance is supporting a project to gather recommendations for cancer research. I applied and was honoured and humbled to join the team. We were each asked to submit our five key Canadian cancer research priorities. What cancer research do you think is most important for the coming years? Yesterday the Ontario team met to discuss the priorities we had submitted, and worked together to discern the most important. Other regional teams will be meeting in days to come, and the rest of the process will unfold. What a tremendous opportunity to together influence Canadian cancer research priorities! Our voices matter.

There is a new CCTG lung cancer research idea that has been worked on and debated about for months. I’m excited about it, and have spoken up for it in CCTG Lung Executive meetings. Yesterday another CCTG patient representative and I agreed to be involved as collaborators on the grant application. Research brings hope!

My day was filled with conversations, emails, messages and more, but before it ended I also decided to participate in research. I filled out the first survey for the Canadian Cancer Trials Group study: CCTG SC27 – The Impact of the COVID-19 on Canadians Living with Cancer. If you would like to learn more about participating in this study, please click here!

There are many opportunities for lung cancer advocacy. We need more people to step up and be part of the team! I enjoy investing a lot of time and energy, but you don’t have to do the same things I do. There are a wide variety of opportunities to make a real difference! We need people with different skill sets to bring their unique abilities and commit whatever amount of time they choose. It’s up to us. Advocacy matters! #Team

photo credit: Chris Draft

Every day I give thanks for terrific teams and advocates, and that I’m well and able to do this work. Please don’t hesitate to reach out if you have questions or comments. #ResearchMatters #Hope #Gratitude

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.

Research and Hope

Research makes a world of difference! Research is a reason to hope, and daily there are advances in cancer research.

Patients, survivors and caregivers can speak into the research process, making it better. There is need for people who have cancer experience to participate as research advocates.

I’m glad to finally have my computer back and running, the corrupted hard drive replaced. Not having a computer made life and advocacy much more challenging. Even without it, I’ve been busy with a lot of lung cancer activities, including ongoing research advocacy with the Canadian Cancer Trials Group and the International Lung Cancer Foundation.

If you are a lung cancer survivor advocate who is interested in learning and growing as a research advocate, please consider applying to the (IASLC) International Association for the Study of Lung Cancer’s “STARS” program, in which I participated as a mentor for six months last year. Such a great learning opportunity! You’ll need a reference and to set aside a few hours to apply. (The AACR Scientist <–> Survivor Program is also excellent, and open to advocates for all cancers.)

I spoke as part of a team to a group of patient advisors at The Ottawa Hospital in January, with the goal of working together to improve cancer clinical trials. They were engaged and inspiring! We are walking in new territory and innovating new pathways. I’m hopeful.

Our monthly lung cancer hope outreach tables at the Cancer Centre continue with good coordinating work from Andrea Redway, with support from The Ottawa Hospital, Lung Cancer Canada and the IASLC. It is clear that the information and conversations make a real difference for survivors who stop by, many are newly diagnosed or in process of being diagnosed, which is one of the most challenging parts of the lung cancer journey. We are privileged to invite them into community, share information and stories, and (perhaps most importantly) listen. It is clear by their facial expressions and body language that they tend to leave much more uplifted and encouraged. We have an amazing team of compassionate and skilled people. From time to time, we talk about the emotional toll it takes on our team. Most agree that it leaves us feeling a little emotional fatigue by the end of the day, but after a bit of rest we are restored. Overall, this work brings so much joy and fulfilment to team members. We get along well and enjoy each others’ company. It’s really good to work together as a team. I’m very grateful for these people and other teammates who invest a day each month.

There are many amazing people doing good work for people affected by lung cancer and other cancers. What a privilege to get to know some of them, and sometimes connect them with each other! It brings me joy to connect people to form strategic partnerships.

It was great to meet Amy Desjardins, Director of the Canadian Cancer Society, Ottawa Region, in person in January, and to learn that their holiday fundraising appeal which used my story has raised over $280,000 for cancer research.

I’m part of several online lung cancer communities, which offer information, empathy and support. I’ve met many hundreds of people around the world through these groups, and it’s exciting to meet in person. When Kim told me that she was coming to Ottawa for the Family Day long week-end, I asked my kids how they felt about having her family over for dinner. They jokingly gave me the “Stranger Danger” talk! They are very supportive of my lung cancer work because we’ve talked about it and they understand how important lung cancer survivor community and advocacy are. They know that it’s up to us to support people and stand up for better outcomes for people with lung cancer. We were very happy to welcome Kim and her family into our home. It was great to spend time together.

I continue to connect with many people affected by lung cancer and spend hours each month listening, encouraging and seeking to inspire hope. It’s an honour. We have the choice to live in hope or fear, so why not choose hope?

Did I mention that my youngest turned 13 recently? That’s right, now all three are teens and life is wonderful! I can’t tell you how grateful I am to be alive and be here with them and for them. I cherish these precious moments, and hope for many more. I dedicate time and effort to advocacy with hope that this will help improve outcomes for others affected by lung cancer, today and in the days to come.

12 Drummers Drumming – Advocates

12 Days of Giving to Lung Cancer Clinical Trials

Drummers keep time. We’re loud. We call out, “We are here!” We have picked the time and place and we are letting you know where we are. We are not going to hide. The place is here. The time is now.

Drummers beat out the call to action, heart cry of the advocate. Advocates bring sense of urgency. Some of us embody it. We know lung cancer is life and death and we are not willing to wait!

Advocates are trained to watch and listen, ask questions, spot gaps, speak appropriately, and drive change.

Advocates are trained in best practices and how to apply them.

Advocacy is #team. We all need a team. We are stronger together, better together. In lung cancer we need everyone, patient, survivor, caregiver, friend, any age, every stage, anyone, everyone.

Our hope is that in 2020, the lung cancer advocacy community keeps growing, supporting, learning, applying best practices, driving change. We are powerful, especially when we are a good team.

We beat the drum. The place is here. The time is now.

We are here. Gather together. Support each other. 

We drive change.

We call for action.

TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight*. Please give and ask people to give. Advocate for lung cancer clinical trials today!

Team Jill:  https://charity.gofundme.com/o/en/campaign/2020-lung-cancer-survivors-super-bowl-challenge/jillhamer-wilson

OR: Team Jill’s Canadian page (for Canadian Income Tax receipts): http://donate.ottawacancer.ca/goto/jill 

#12Days of giving to #lungcancer #clinicaltrials #Hope #Care #Team #Support #SilverLinings #Stories #Awareness #Early Detection #Treatment #Research #Survivorship #TeamDraft #ChrisDraft #Please #Give #Advocate #ThankYou #lcsm

* Please give. TODAY is THE DAY! The Survivors Super Bowl Challenge ends tonight: technically very early tomorrow morning – 3:00am New York City time.


#Shift

This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

Ottawa to Atlanta

I can’t tell you how excited I am to be heading from Ottawa to Atlanta on Friday for the American Association for Cancer Research Annual Meeting. This is a huge conference, with 20,000-30,000 of the top cancer researchers in the world, plus many clinicians and so many others … including me! I’m participating in their “Scientist <–> Survivor Program”, which groups cancer survivor advocates with mentors, both in advocacy and also science. That’s right: we get connected with an expert in cancer advocacy, and also a scientist mentor to help us make the most of this amazing conference! There are so many sessions, but no one can go to them all. I’ve been trying to plan which to attend, and I’m facing scheduling conflicts. So many great options!

I’m thankful they have a conference app to help us figure it all out, because this event is packed with possibilities! If you are curious about what’s happening and who will be presenting, you can browse the sessions and check out abstracts from the comfort of your own home. Here’s a link to investigate the sessions and presentations. Here’s the link to my abstract. And this is the link to donate to the great work that the AACR does, through supporting my 5K walk on Saturday morning.

The app also has maps to help us find places. No getting lost at AACR Annual Meeting 2019! It will even show the path to walk from where one is to where a particular session is taking place. (In case you were wondering, it would take about 15 days to walk from where I am now to the Georgia World Congress Center, home to this preeminent cancer research showcase. I’ll stick to my plan to fly!)

Yes, I am quite excited about this privilege to participate in the AACR Scientist <–> Survivor Program. I feel very honoured that I get to be at the Annual Meeting, and I know I’m representing Canada as well as lung cancer patients, survivors and advocates. I will endeavour to make the most of this opportunity, and I expect I will spend time with exceptional people and learn a lot while I’m there.

I wish I could take all of you with me! Since we can’t all go, I’m going to try to do the next best thing. Here is one of the ways I’m going to step out of my comfort zone while I’m in Atlanta: I’m planning to post videos on YouTube of my time there.

Here’s a link to my first one! I hope you’ll follow my adventure in Atlanta on YouTube!

Choose HOPE! Inspire courage. Incite hope. Foment communities of hope.

#AACR19 #AACRSSP19

Not even a migraine…

No, not even a migraine could stop me, last December, from submitting my application to the American Association for Cancer Research (AACR) Annual Meeting Scientist – Survivor Program, which takes place March 30 – April 3, 2019, in Atlanta Georgia! #AACR19 #AACRSSP19

This program intentionally connects scientists with cancer survivors during this big, exciting international cancer research meeting. It may be difficult for some of you to understand why I would be so terribly keen to go, but trust me! I really, really wanted to go and be part of this amazing opportunity to connect with people, learn things and tell my community about them!

The AACR’s website says their Annual Meeting’s program, “covers the latest discoveries across the spectrum of cancer research … and highlights the work of the best minds in research and medicine from institutions all over the world.”

I’d been trying to work on my application, as the days raced towards the December deadline. Busy days, Lung Cancer Awareness Month activities, end-of-year extra’s, concerts, wrapping up details from the November “Living with Lung Cancer: Ottawa’s 1st Patient-Driven Mini Summit”, kids’ activities, special Christmas events, family travel, etc.

Suddenly I was down to the wire with thoughts swirling in my head, so fast I couldn’t write them down. I had answered most of the questions, only a couple left plus the BIG ONE: an abstract for a scientific type of poster that I would actually make and present if I was accepted into the program. (No pressure!)

What made it worse was that my hands weren’t working well. Nerve pain is a side effect of the new drug I’m on. Writing or typing can be very painful.

A dear friend helped by sitting at a coffee shop with me the evening of the deadline, jotting down my words on paper, helping me to compile my myriad of lung cancer ideas and thoughts into one clear concise “sort-of-scientific-sounding” abstract. When it was time to go home I still didn’t have it, and my headache was growing worse. I started to feel terribly sick …

I’m not going to tell you how physically awful I felt that night as I struggled at the computer to get the words together and inputted to the computer so I could submit my application. But I did it!

And here it is, all official, at this link, or you can read it below.

I am so happy to say that I am incredibly honoured to have been accepted into the program! A lot of people didn’t make it. Only 40 of us did.

As I go to this amazing conference, I’m representing those who weren’t accepted and those who didn’t apply. That’s a big responsibility, and I intend to share the things I will learn with as many people as I can.

You’ll be hearing more in days to come, but for now, I’ve got to go work on that poster! 😀

ADV06 / 6 – Informed, inspired, empowered: The new era of lung cancer patients/survivors in Ottawa, Canada

 March 31, 2019, 1:00 PM – 5:00 PM Section 29

Presenter/Authors

Jill Hamer-Wilson. Independent Advocate, Ottawa, ON, Canada

Abstract

This poster will discuss many aspects of Living with Lung Cancer. Jill Hamer Wilson’s mission is to raise up a team of lung cancer advocates whose voice cannot be denied and who will influence for change. Caring until there is a Cure through more research will equal more survivors. Initiatives include monthly support meetings for lung cancer patients, regular online support and communication, monthly outreach tables in the cancer centres, annual lung cancer patient summits, regular encouragement, inspiration and spreading of hope which goes beyond ourselves, beyond lung cancer, which breaks down walls that divide us. Constituencies include local lung cancer patients, and focus locally, but also reach to all affected by any kind of cancer, anywhere in the world. Ottawa’s 1st Patient-Driven Mini Summit took place on November 27, 2018. It provided a terrific stimulus to provoke discussion and networking with peers and leaders of interest. The psoter will also explore the experiences of lung cancer patients at the Ottawa Hospita; the journey from scarcity to abundance and the under resourcing to forming a community of hope and providing of resources for others. Examples of collaboration, such as speaking on panels about bench to bedside research and care, clinical trials, and fundraisers will be outlined along with learning and growth opportunities for lung cancer patients/advocates.

AACR Annual Meeting 
Home Page

Queen’s Park Day, described by CCSN

Please take a few moments to read what is below, what the good people of Canadian Cancer Survivor Network posted on their website about our day at Queen’s Park. If you follow the link, you can go right to their website which has more pictures from the event. CCSN does great work, including offering helpful resources like free webinars. I’m grateful for opportunities to partner with them. We are stronger and better when we work together.

Canadian Cancer Survivor Network/Connect/News/CCSN & Lung Cancer Canada to MPPs: Lung Cancer Patients have a Right2Survive

CCSN & Lung Cancer Canada to MPPs: Lung Cancer Patients have a Right2Survive

March 1, 2019

Lung cancer is the most commonly diagnosed cancer in Canada. It kills over 20,000 Canadians every year – more people than colorectal, breast, and prostate cancers combined. Despite being the number one killer, outcomes in lung cancer fall behind other cancers. All cancer patients deserve a chance to become cancer survivors, and this includes lung cancer patients too.

The Canadian Cancer Survivor Network (CCSN), in partnership with Lung Cancer Canada (LCC), hosted a legislative reception and breakfast at Queen’s Park on February 20th, 2019. Patients, survivors, caregivers and patient groups from various parts of Ontario attended and spoke with MPPs on the importance of ensuring that lung cancer patients receive opportunities in survivorship.

Speakers at the reception included The Honourable Christine Elliott, Deputy Premier and Minister of Health and Long-Term Care; MPP France Gélinas, NDP Health Critic and Chief Opposition Whip; MPP John Fraser, Interim Liberal Leader; and MPP Mike Schreiner, Green Party MPP and leader of the Green Party of Ontario. The reception was sponsored by MPP Andrea Khanjin, Parliamentary Assistant to the Minister of the Environment, Conservation and Parks.

Lung cancer patient advocate, Anne Marie Cerato, spoke about her journey to survivorship after being diagnosed at a young age with stage IV lung adenocarcinoma. She also celebrated ten years of being a lung cancer survivor with the audience, one that she described as a “unicorn” and “rarity” in the lung cancer community.

Over 30 MPPs from all parties as well as cabinet ministers attended and interacted with patients, survivors, caregivers and representatives from the patient community.

Groups from the patient community included After Breast Cancer, Dense Breasts Canada, Gilda’s Club Greater Toronto, Canadian PKU & Allied Disorders, Life Saving Therapies Network, Lymphedema Association of Ontario, Alberta Lymphedema Association, Lymphoma Canada, Ontario Lung Association, Prostate Cancer Canada, Canadian Cancer Society and Niagara College Canada.

Cancer patient advocates, survivors and caregivers from all over Ontario attended the event. These included:

  • From the Greater Toronto Area and neighbouring cities: Anne Marie Cerato, Larry Frydman, Raymond Laflamme, Roz Brodsky, David Soberman, and Kathryn Hamilton
  • From Niagara: MaryAnn Bradley
  • From London: Palmerino Leone and Julianna Leone
  • From Ottawa: Jill Hamer-Wilson and Andrea Redway

These fantastic patient advocates met with many MPPs, attended Question Period and shared their stories and input on how we can improve Ontario’s healthcare system in meetings with MPPs from all political parties.

“This experience gave me the opportunity to share with MPP France Gélinas, MPP Jill Andrew and MPP Daisy Wai, the early detection lung cancer screening pilot project. These conversations helped me to bring awareness and what it would mean to be able to treat lung cancer earlier than when it has advanced to Stage IV, and how this would be cost-effective in the long run.

I found that we still have a long way to go to end the stigma behind lung cancer and bring light to how important early detection in cancer is.” – MaryAnn Bradley

What We Said: Screening, affordable medications and patient engagement

Earlier detection is an important tool for improving long-term survival rates. Early lung cancer screening programs can also save our healthcare system money. According to Canadian studies, early treatment can save up to $15,000 per patient, as opposed to treating it at a later stage. We urge all political parties to continue their support by turning the early screening pilot programs in Ontario into permanent programs.

Scientific advancements continue to transform treatments available for lung cancer patients, offering them more options and the potential of a longer life for those with advanced cancers. However, there are long delays between Health Canada approval and provincial funding in Ontario – with one treatment taking more than 1400 days.

Ontario patients also have to pay for take-home oral cancer medications. This presents a barrier for many as these medications are not covered in the province, in contrast to Alberta and British Columbia.

We urge all political parties to take leadership and to bring Ontario’s healthcare system up to date. We also urge all political parties to ensure that the voices of those fighting cancer are heard, as the government consults on evolving our healthcare system to best meet the needs of patients, survivors and caregivers.

About lung cancer and the Right2Survive campaign:

The Canadian Cancer Survivor Network (CCSN) has partnered with Lung Cancer Canada (LCC) to increase awareness of lung cancer and to destigmatize this disease. The Right2Survive campaign, www.right2survive.ca, aims to build a community of support around the need to do more to improve lung cancer survivorship.

Canadian Cancer Survivor Network
https://survivornet.ca/news/ccsn-lung-cancer-canada-to-mpps-lung-cancer-patients-have-a-right2survive/

Overslept!

Even though I set two alarms to make sure I woke up in time, I managed to sleep through both of them, plus the two that regularly go off on a Tuesday morning. I can’t believe I slept through four alarms this morning!!!

I’ve never done that in my life! I guess I needed that extra hour and a half of sleep, and somehow -miraculously- I wasn’t terribly late for my ride and we made it to the station in plenty of time. So thankful!

We’re on our way! #Right2Survive