Statement to Health Canada by Helena Kirk, August 2018.
My name is Helena Kirk and I would like to share my story with you and ask for your help with something that I think all Canadians would want to support.
I am now 12, but when I was 3.5 years old I was diagnosed with leukemia and underwent 841 days of chemotherapy at the Hospital for Sick Children.
I have many friends that have cancer too:
Like my best buddy Jadyn who passed this March because the clinical trial that could have saved her life came too late.
Like my friend Aidan who qualified for a trial in the US but his family could not quickly find $50,000. He waited for treatment options offered through SickKids and after over 4 months was offered a clinical trial but then they discovered his tumour had grown 400% while he waited. He is now in palliative care and has only a short time left to live.
Like my friend Emma who had the same cancer as Terry Fox. She received the same treatments Terry did almost 40 years ago. I had one of those drugs too, and I can tell you the effects on my body were horrible. In fact, in the last 40 years there have only been 2 treatments approved by Health Canada for cancer kids.
Like my friend Jordan who received Car T cell therapy in the US last year and Sarah who received the same therapy at SickKids in April. Both their treatments were paid for by OHIP. Car T cell therapy gives kids that would otherwise be terminal an over 90% chance of being in remission. Sarah is now in remission and Jordan is 1 year in remission.
Yesterday we got some heartbreaking news that a child in Alberta got declined by the Provincial government to come to SickKids in Toronto to get Car T Cell therapy. I don’t know this family but how upset would you be to know that there is a treatment that could save your life and kids in Ontario and Quebec are getting it and you can’t…. you get palliative care instead because your family lives in Alberta.
For those of us who are considered ‘cured’, our treatment comes with high costs. By age 50, virtually all childhood cancer survivors will have at least one chronic illness which has societal and healthcare costs. Many of us are currently experiencing immediate effects such as heart and lung issues, short stature, issues hitting puberty, ongoing pain, chemo brain and even mental health concerns. The list goes on.”
Canada is the best country in the world. But we are failing our childhood cancer families.
How is it okay that there have been thousands of kids in cancer treatment for 40 years having drugs that are used off label?
How is it okay that a Canadian child lives or dies based on where their family lives in Canada?
How is it okay that one of my friends can get to a trial in the US and another one can’t, based solely on the ability of the family to find $50,000 on short notice?
How does it protect Canadian children to have a federal approval system that is so onerous that kids will die waiting for trials or treatments.
How is it okay that cancer kids in other countries get access to treatments and trials and Canadian kids don’t because our approval systems are seen as “too much trouble”?
When I started my advocacy work in 2017 I talked to the Prime Minister, Minister of Health and Minister of Science and one of my requests at that time was to get the smartest people in Canada in a room to fix these harsh realities.
Well today, I am so happy that Health Canada has agreed to this meeting and to start having conversations on these issues. You are among the smartest people in Canada and you have the power to make the changes that are going to ensure many, many more Canadian kids have pathways to survive cancer like me. I am glad to be at this meeting today and I thank you for having me and my advocacy organization Helena’s Hope at the table.
I may be just 12, but I have over 100 families from 8 Provinces joining my advocacy efforts. They are writing letters and having meetings with their MPs. So far, we have 30 Ministers/MPs supporting my efforts and that number grows every week. I have the attention of the National and local news media including a front page article and supportive editorial opinion from the Globe & Mail, Global National, City TV, CBC Radio and many more that you can see on my site and they are eager to follow my progress.
I don’t represent oncologists, I don’t represent research groups and I don’t represent politicians. I represent myself and the thousands of families in Canada who are heart broken from seeing kids, siblings and young friends dying of cancer.
We want to have our voices heard and we want to be helpful.
J’ai perdu beaucoup des amis à cause du cancer. Aussi, j’ai plusieurs des amis qui continue à se battre contre le cancer pour plus que 8 ans. Je veux trouver une autre façon dont laquelle les enfants avec le cancer peuvent être les survivants comme moi.
Today I am ready to listen and learn and I am asking for your help in a few ways:
- There are many issues that I have raised and that I am guessing require policy makers in different parts of Health Canada to participate if we are going to be able to make changes. I would love all you smart people at Health Canada to continue to find solutions that will work in Canada. Helena’s Hope is working with a Ph.D. and many leader experts to develop background and reference documents on the topics of clinical trial pipelines, incentivizing investments into CAYA cancer, ethics review boards and survivorship that I am hoping Health Canada will find helpful.
- To agree to host a meeting in September and October with more smart Canadians joining us such as experts from research, pediatric oncology, government agencies, and families to work on solutions for Canadian cancer children. There will likely be another media push for Childhood Cancer Awareness month and this positive step can be a focus.
- Ensure that we include mechanisms for cancer kids and families to learn about this process and have their voices heard. The Helena’s Hope group will help in any way we can.
- [Next Slide] Finally, I would love to be able to meet again with the Minister of Health at the end of this year and talk about the great report that Health Canada developed that has the endorsement of all these smart people.
My hope is to get an announcement in the 2019 federal budget and a commitment to update many federal health policies in 2019 that will ensure many more Canadian kids will survive cancer and live long, healthy lives.
Merci pour m’écouter au nom de tous les enfants avec le cancer au Canada.