Advocacy

We make change for all brain tumour patients at a policy level while empowering you to effect change for yourself.

What We’re Doing: Important Brain Tumour Issues

Every Canadian affected by a brain tumour has the right to have the information and support needed to fully participate in all aspects of life. 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:

  • Investigating and advocating on important issues to the brain tumour community
  • Contributing to Canadians’ understanding about these issues and how they can work affect change
  • Working with partners in Canada, North America and Internationally on efforts important to brain tumour patients.

We also provide you with tips for advocating for yourself.

Issue: Counting Every Brain Tumour

Incomplete or inaccurate brain tumour data has a direct effect on the ability of a province to accurately assign health care dollars by region, create centres of excellence for treatment, create efficiencies and plan for the greatest needs. The more that is known about the incidence of all types of brain tumours, will allow for the enormous treatment cost to be planned for, targeted and reduced.

Knowing the number of Canadians affected by a brain tumour – including all stages and grades – is critical to supporting every Canadian affected by this disease.

On May 14, 2019 we were delighted to launch the Brain Tumour Registry of Canada – a surveillance research collaborative.

The Brain Tumour Registry of Canada was launched with a first incidence report, in partnership with four provincial cancer registries, which speaks to 70% of the Canadian population. This is the first report to incorporate non-malignant brain tumours in Canada. We hope to release a further survival report later this year and, with your support, in 2020 a comprehensive national report will include incidence and survival data for the entire Canadian population.

We will not stop until every brain tumour is routinely counted, as every brain tumour counts!

Issue: Equal Access to Care

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:

  • Working on equal access to Temozolomide (Temodal) for all patients in Canada. The internationally accepted, standard treatment regimen for the most common type of brain cancer is not fully accessible in parts of Canada.
  • Monitoring the drug approval process and communicating next steps and opportunities for action to the brain tumour community. This includes watching for any new approval processes for drugs and providing patient input when possible – through approval bodies like pCODR
  • Working with the Canadian Cancer Action Network who advocate for the entire cancer community to by working with federal and provincial decision makers to ensure a pan-Canadian system evolves that optimizes care and treatment outcomes through all phases of the cancer continuum
  • Providing information for you to advocate for your best care, including gaining access to services and treatments.

Issue: Increased Research Funding

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 Funders’ Collaborative
  • Neurological Health Charities Canada which is a leading a number of research projects into neurological health conditions. These projects will highlight details about, “the incidence and prevalence, impact, risk and health service utilization of our priority conditions, the final culmination of this work will result in a picture of the neurological landscape of Canada.”

Advocacy Partners

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.

 

Advocating for Yourself

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.

Tips on developing a successful self-advocacy plan for brain tumour patients and families:
Understand the Issue

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.

  • Understand the Diagnosis: It is very important that anyone who is advocating for themselves or someone else understand their diagnosis and how it affects them. With this understanding you can best communicate the needs of the brain tumour patient
  • The treatment options: Just like understanding the diagnosis is important, understanding the treatment recommendations, potential side effects and any other impacts on the individual and family is critical to effective self-advocacy.
Understand Your Needs
  • Understand the needs of the individual: Once you understand the diagnosis and treatment recommendations, the next step is to understand what you, or your loved one, requires – what are their goals? Is it quality of life? Is it access to a specific treatment?
  • The Gaps: What is standing in the way of the goals of the brain tumour patient? Who can make changes?
Work with Decision-Makers
  • State What You Need Simply: Understand your audience’s interests and concerns, and where your issue fits in. Develop no more than 2-3 key messages that explain the key points of your issue in simple language. Position these messages onto your audience’s interest and concerns, presenting a “win” for you and your audience
  • Tell Your Story:  Be able to discuss your issue in the context of a story. No matter who you are going to speak with, telling your personal story and the impact that change will have, is  the key to effective self-advocacy
  • Put Your Plan into Action: Build relationships, communicate, set up your meetings or appointments, and follow-up and don’t give up!

Tips for successful self-advocacy

Top Tip

One step to ensuring you understand your diagnosis and treatment is to obtain a copy of the Brain Tumour Handbook.

Share your Success

The brain tumour community can learn from your success and any opportunities for improvement that your efforts highlight.

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An advocate's story

Listen to Claire’s advice on advocating for yourself.