Original language of petition: English
Petition to the House of Commons in Parliament assembled
- Diffuse Intrinsic Pontine Glioma (DIPG) is an aggressive brain tumour found in the brainstem;
- DIPG slowly takes away all vital functions while cognitive functions remain intact, making the child a prisoner in their own body;
- DIPG is inoperable and incurable with 0% survival rate;
- DIPG is the second most common malignant brain tumor in children and the leading cause of brain tumour deaths in children;
- DIPG occurs equally across gender and affects children typically between 5 - 7 years old;
- The prognosis and treatments for DIPG have not improved in more than 40 years;
- The current strategic plan of the Canadian Institutes of Health Research (CIHR) identifies High Fatality Cancers as high priority and supports innovative research targeting these cancers;
- The CIHR has advised that less than $155,000 has been allocated on average annually to DIPG;
- Due to limited funding to support research in DIPG, it remains largely unknown or misunderstood to the general public;
- Most people are unaware that DIPG is the leading cause of brain tumour deaths in children, often not finding out about this disease until they know someone whom it affects; and
- This declaration would help to educate the public about this disease, encourage funding to support ongoing research, increase dialogue in the professional medical community, further publicize and promote Canada's involvement in the fight against DIPG, and honour the victims of this terrible disease.
We, the undersigned, citizens and residents of Canada, call upon the House of Commons in Parliament assembled to:
- Declare May 17 of every year as the National DIPG Day of Awareness across Canada.
Government response tabled
Response by the Minister of Health
Signed by (Minister or Parliamentary Secretary): Adam van Koeverden
Diffuse intrinsic pontine glioma (DIPG) is a highly aggressive brain tumor that is difficult to diagnose and treat. DIPG, in combination with other gliomas, has been the third most common cancer in children in Canada ages 0-14 (2011-2020). The Government of Canada recognizes the importance of raising cancer awareness, and contributing to cancer research to advance detection efforts and treatment options.
In Canada, May is widely recognized as Brain Tumour Awareness Month, while October 24th is recognized as Brain Cancer Awareness Day. International Childhood Cancer Day is recognized on February 15th, and September is Childhood Cancer Awareness Month. These days of recognition are in addition to National Cancer Wellness Awareness Day on June 26th, and World Cancer Day on February 4th. Further information regarding these health promotion days is available on the Government of Canada’s website: https://www.canada.ca/en/health-canada/services/calendar-health-promotion-days.html.
New DIPG research may provide the key to improved treatment options. The Public Health Agency of Canada (PHAC) monitors cancer in children, and supports childhood cancer research, including DIPG, through the Cancer in Young People in Canada (CYP-C) program. This program makes data on cancer among children and youth available for research and aims to improve outcomes, enhance the quality and accessibility of care, improve survival, and reduce the lasting effects of treatment. CYP-C operates through a collaboration between PHAC, the Canadian Partnership Against Cancer, and the C17 Council, a network of all seventeen children’s cancer hospitals across the country. Further information about CYP-C, Canadian childhood cancer statistics, and access to CYP-C data, is available online: https://health-infobase.canada.ca/data-tools/cypc/publications.html.
Over the last five years (2016-17 to 2020-21), the Canadian Institutes of Health Research (CIHR) invested over one billion dollars in cancer research. Of this amount, $39 million was invested specifically for pediatric cancer research. It is important to note that knowledge acquired in one area of cancer research increases the total knowledge brought to bear in all areas of cancer research.
In April 2019, CIHR launched a Cancer Survivorship Team Grants funding opportunity in partnership with the Canadian Cancer Society. It represents a joint commitment of $10 million for at least four research teams that will address recently identified gaps in cancer survivorship research (including pediatric, adolescent and/or young adult survivorship), such as adverse late and long-term effects associated with cancer treatments.
In March 2020, CIHR provided $2.5 million to the Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER), led by Clinical Trials Ontario and the Maternal Infant Child & Youth Research Network. This investment will support the development of research support infrastructure to facilitate multi-site studies for enhanced and expedited pediatric cancer research.
Most recently, Budget 2021 proposed a $30 million investment over two years for CIHR to address gaps in pediatric cancer research and ensure sustainable funding in this area. With this new investment, CIHR has launched a research initiative on pediatric cancer, leveraging its Project Grant Program to support excellent research projects, and through a new funding opportunity, will catalyze the creation of a Pediatric Cancer Consortium.
The Consortium will advance a shared vision to collaborate and produce research that can help inform policy and practice predicated on better science, better access, and better coordination to improve lives of pediatric cancer patients and their families and caregivers. This interconnected consortium will bring together the ecosystem of pediatric cancer research platforms, networks, research teams, policy makers, people with lived/living experience, Indigenous communities and organizations, healthcare providers, and other entities. Applications to the Consortium funding opportunity are open and funding is expected to start in summer 2022.
CIHR has also supported research projects specific to DIPG. Most recently, CIHR provided $639,732 to Dr. James Thomas Rutka and his research team at the Hospital for Sick Children in Toronto for preclinical experiments to determine effective drug use on DIPG tumours. These experiments are essential to the upcoming Phase 1 Clinical Trials planned for children with this disease. CIHR also supported the research of Dr. Andrew Deweyert of the University of Western Ontario to investigate promising new treatments for DIPG. The results of this project will provide key information needed to advance these treatments towards clinical application.
These investments will help improve health systems and health outcomes for pediatric cancer patients and their families.
- Presented to the House of Commons
March 25, 2022 (Petition No. 441-00276)
- Government response tabled
- May 9, 2022
Only validated signatures are counted towards the total number of signatures.