At Brain Tumour Foundation of Canada (BTFC), advocacy is a powerful way to stand up for patients and families, influence change, and bring hope where it’s needed most. Throughout 2024, our team has been deeply engaged in projects, working groups, and government consultations, all with the goal of improving care, access, and quality of life for those affected by brain tumours. Explore a brief overview of our advocacy efforts from last year, many of which are continuing into 2025.

Building strong networks and partnerships

This year, BTFC actively participated in all meetings and working groups of the Best Medicines Coalition (BMC), advocating on issues such as drug shortages, Pharmacare, rare diseases and drug pricing reform. We contributed written and oral submissions on behalf of BMC, including input on Patented Medicine Prices Review Board (PMPRB) Phase 2 Consultations for new pricing guidelines and a submission on Bill C-64, the Pharmacare Act. Our advocacy on drug shortages ensured that the needs of brain tumour patients were brought to the Multi-Stakeholder Steering Committee on Drug Shortages, and we are preparing to engage with a new BMC Patient Engagement working group in 2025.

BTFC also participated in meetings of Neurological Health Charities Canada (NHCC) and its Strategic Priorities Working Group, focusing on advocating for a renewed National Population-Level Health Survey. Working alongside SANTIS and NHCC member organizations, we supported the launch of a letter-writing campaign using the AdvoKit Tool to empower Canadians to contact their representatives and voice support for updating neurological health data, efforts that will continue into 2025.

Advancing care pathways and global collaboration

In collaboration with the Toronto Rehabilitation Institute, we provided resources and expertise to help develop a dedicated care pathway for patients with brain tumours, addressing critical gaps in rehabilitation services. This partnership aims to ensure brain tumour patients receive specialized assessment and care, with meetings continuing into next year.

We also joined international efforts with other brain tumour organizations to improve care for patients with IDHm Diffuse Glioma. Two new initiatives are underway: one to develop a patient guide and another to create a resource for patient associations, facilitated by Servier. These projects aim to empower patients and families with information and raise global awareness of the burden of gliomas.

Key projects and publications

BTFC’s advocacy extended into projects like the Coalition Priorité Cancer au Québec (CPCQ) report, where we provided context on brain tumour research and patient needs. Thanks to the input from Dr. David Fortin and Dr. James Rutka, the resulting recommendations emphasize the importance of innovative treatments and comprehensive support. We’re excited to share this report in both English and French in 2025.

In October, BTFC developed a submission to the Standing Committee on Health in support of Bill C-277, advocating for a National Strategy on Brain Injury. With contributions from Dr. Cusimano and his team, we highlighted the overlapping challenges faced by patients with brain tumours and those with brain injuries, underscoring the need for coordinated strategies.

We also partnered with the International Brain Tumor Association (IBTA) and global organizations to co-author an article titled “Brain tumour patients’ rights and the power of patient advocacy: The current international landscape,” published as an Editor’s Choice in Neuro-Oncology Practice Journal. This piece highlights international disparities in care and the crucial role of advocacy in bridging these gaps for patients worldwide.

Another significant collaboration was the Glioma Patient Pathway project, where BTFC supported recruitment efforts for patient interviews to ensure that lived experiences were accurately represented. The resulting abstract was accepted for poster presentation at the 2024 Society for Neuro-Oncology (SNO) Congress and for oral presentation at the Japan Society for Neuro-Oncology’s 2024 meeting. A manuscript for publication is planned for 2025.

Addressing lomustine discontinuation

A major advocacy priority this year was the looming discontinuation of lomustine, a key chemotherapy for brain tumours. BTFC sent a letter of concern to the Minister of Health and participated in meetings with Health Canada’s Drug Shortages Unit, joined by expert neuro-oncologists Drs. Rebecca Harrison and Marshall Pitz. We welcomed Health Canada’s recognition of lomustine as a critical drug and its addition to the Teir 3 Drug Shortages List which opened the door for exceptional importation as an option to lots have been granted a shelf-life extension to patient access while long-term solutions are explored. BTFC also engaged with MP Peter Schiefke, co-chair of the all-party cancer caucus, to discuss solutions and ensure this issue stays on the government’s radar. Read the latest updates here.

Federal budget consultations

Advocacy efforts extended to federal budget consultations, where BTFC recommended priorities including implementing National Pharmacare with a standard formulary for take-home cancer drugs, creating a dedicated federal unit for monitoring drug shortages, supporting a National Neurological Strategy, increasing federal funding for brain tumour research, and maintaining core funding for charities delivering essential support services.

Through our involvement in BMC and NHCC submissions, we supported recommendations for a National Patient Ombudsman, better access to rare disease treatments, a national neurological health survey and ensuring data privacy for Indigenous communities in health research.

Championing access to treatments

In June, BTFC co-signed an advocacy letter to the Canadian Association of Provincial Cancer Agencies (CAPCA) with multiple organizations, calling for timely access to approved treatments, such as Novocure’s Optune device. While CAPCA stated it was outside their scope, BTFC remains committed to advocating for equitable access to innovative therapies for brain tumour patients in 2025 and beyond. Read the latest updates here.

Moving forward together

From federal consultations to international collaborations, 2024 has been a year of powerful advocacy, driven by the needs of the brain tumour community. BTFC remains dedicated to ensuring patient voices are heard and that Canadians affected by brain tumours receive the care, treatments and support they deserve. Stay connected with us through our website, newsletters and social media as we continue this vital work together.