“Canada is the best country in the world, but we are failing our childhood cancer families.” That statement came from Helena Kirk, Founder of Helena’s Hope. Helena is a 12-year-old cancer survivor and is leading the charge to change the way children with cancer are allowed access to experimental cancer treatments.
As it is now, Canadian children with cancer are very limited to access to clinical trials and a significant stumbling block is where they live. Provinces identify early phase clinical trials as “experimental” and the are often not covered by provincial insurance. It gets even more problematic if the clinical trial is in a different province or country. And even if they finally do get access to that experimental treatment, it may be too late. Often the ones seeking treatment for an early phase clinical trial are desperate – they have aggressive forms of cancer with no approved treatments available to them. As such, any delays in getting the right paper work completed to gain entrance to a trial can seriously jeopardize the child’s chances of survival, regardless if the treatment works or not. Helena and her friends want to change that.
The proposal they have drafted has the support of 27 cancer organizations (including Helena’s Hope) and was drafted by the Advocacy for Canadian Childhood Oncology Research Network (Ac2orn). The proposal has 2 requests for the Federal Minister of Health (Ginette Petitpas Taylor) to consider:
- Establish a program that will facilitate equal access to promising phase 1 and 2 clinical trials for children, adolescents, and young adults (CAYA) with cancer, regardless of home province or financial means; and
- Establish a collaborative working group with Health Canada for two-way conversations, with patient and family engagement, that identifies challenges and initiates solutions to move forward on improvements in CAYA cancers.
In a news release, Patrick Sullivan, Chairman at Ac2orn and the father of Finn who died of cancer at the age of 3 said, “We are in a Golden Age of cancer research and are on the edge of a world where children like Finn will get to thrive and grow. But without innovation, our Canadian children are going to be left behind and where you live in Canada will impact if, when, and how you will benefit from the changes that are coming. This proposal to the Federal Government was developed to address the opportunity this Golden Age presents while recognizing where the challenges lie.”
Below is a short video by Helena highlighting the many children in Canada who are being denied experimental treatments largely as a result of where they live.