There are so many ways you can help make a difference in the lives of patients and families today.
Working to change practices and policies that are not inclusive of this community is critical. Brain Tumour Foundation of Canada advocates on behalf of the brain tumour community by:
We also provide you with tips for advocating for yourself.
Dexamethasone is widely used to reduce swelling of brain tumours and address symptoms ranging from severe pain and seizures to palliation at end-of-life.
On May 1, 2020, the federal government’s Tier Assignment Committee added dexamethasone to the Tier 3 list, indicating that a shortage of this drug would have significant impact on the Canadian health system. It is an important step, but there is far more action needed. In the past month, there have been seven shortage reports for dexamethasone issued in Canada by two major generic manufacturers related to its use in treating severe COVID-19 patients.
Our position paper recognizes the vital importance of pharmaceutical drug products for persons with brain tumours, including dexamethasone, and calls for the following:
Brain Tumour Foundation of Canada will continue to monitor and act on this issue and welcomes any opportunities to collaborate on steps toward a stable and secure system of drug management in Canada.
Equal access to drugs that treat both a brain tumour and associated conditions, as well as the related financial burden, is an important issue for brain tumour patients and their families across Canada. Where a patient lives should never determine the treatment for a brain tumour.
The diagnosis of a brain tumour can be overwhelming and confusion about access to drugs is an unnecessary burden. Quite simply, it is confusing for patients and families to see provincial health care plans making different decisions based on the same evidence.
We advocate for better access to all brain tumour drugs and increased transparency and collaboration among all stakeholders with the aim to help every Canadian affected by a brain tumour.
Equal access to treatments and drugs and the associated financial burden is an important issue for brain tumour patients and their families in Canada. Brain Tumour Foundation of Canada is active on this complex issue in the following ways:
Every day, 27 Canadians are diagnosed with a brain tumour. While successful treatments do exist, there is no cure. As the leading organization in Canada focused on funding brain tumour research, we are the only group dedicated to overcoming this deadly disease.
Thanks to the support of donors, research funds are distributed every year to researchers across Canada who are examining the cause of and cure for brain tumours.
The Canadian Cancer Research Alliance publishes an annual review of investment in cancer research in Canada. Brain Tumour Foundation of Canada submits our contribution to this effort this publication. See the latest reports.
We also work towards increased funding for brain tumour research through partnerships and collaboration with other organizations including:
Brain Tumour Foundation of Canada works together with many partners in the cancer and neurological health care communities to advance the issues important to you. This includes working with the following groups:
Around the world, the brain tumour community is a vast connection of organizations, health care institutions, patients, families and initiatives. These efforts are networked through the International Brain Tumour Alliance (IBTA). The IBTA coordinates the International Brain Tumour Awareness Week. In 2016, this awareness effort wil take place from October 22 to October 29, 2016.
Self-advocacy means working to help yourself or a loved one diagnosed with a brain tumour obtain needed services and to maximize their quality of life.
It is important for brain tumour patients and their networks to be able to speak for themselves and obtain their rights as patients to bring positive change to their lives. Self-advocacy may help individuals to gain access to needed services and treatments.
To be successful with your advocacy, you need to remain focused and be persistent. Whether advocating for access to health care, workplace accommodation, or another issue of importance to you, understanding your issue and developing a plan to self-advocate will be your essential guide.
Listen to Claire’s advice on advocating for yourself.