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Advocacy

Cure Brain Cancer is the peak organisation for brain cancer research, awareness and advocacy in Australia. We advocate on behalf of people living with brain cancer.

Michelle Stewart presents to Senate enquiry

Introduction

Cure Brain Cancer Foundation is leading the efforts to change the game for people living with brain cancer, their carers and families in Australia. In line with our mission to increase five-year survival to 50% by 2023, we are engaging with numerous stakeholders, including Federal and State governments.

Wherever possible, Cure Brain Cancer seeks to collaborate with stakeholders with broader agendas to create a more powerful voice.

At present, Cure Brain Cancer is focused on four areas:

  • Increasing government funding for brain cancer research
  • Increasing access to quality (local and international) clinical trials
  • Early diagnosis
  • Access to new and re-purposed treatments and medicines

Government

Cure Brain Cancer Foundation conducts regular Ministerial and adviser briefings and is continually building and strengthening relationships across the political spectrum. We are regularly called upon to make submissions to government inquiries, copies of which can be found below.

March 2017

Senate Select Committee into funding for research into cancers with low survival rates

Cure Brain Cancer Foundation is calling for this to be addressed in its submission to the Senate Select Committee into Funding for Low Survival Cancers, the deadline for which is 31 March, 2017. Cure Brain Cancer Foundation’s submission will highlight the need for:

  • the removal of, or compensation for, structural bias in the National Health and Medical Research Council (NHMRC) process, which inadvertently disadvantages brain, and other rare cancers
  • provision of long term support and stability for brain cancer researchers to ensure a clear and more secure career path
  • reimbursement of diagnostics, treatments and procedures to facilitate the highest levels of care

June 2016

Priorities submission to the Medical Research Future Fund (MRFF) in response to “Consultation for the development of the Australian Medical Research and Innovation Strategy and related Priorities"

July 2015

Submission to the Senate Community Affairs Legislation Committee: Inquiry into the Medical Research Future Fund Bill 2015

April 2015

Submission to the Senate Committee on Community Affairs: Inquiry into the availability of new, innovative and specialist cancer drugs in Australia

January 2015

Pre-budget submission

Watch Cure Brain Cancer's Head of Research Strategy, Michelle Stewart and Head of Engagement, Barrie Littlefield present to the Senate enquiry on the availability of new, innovative and specialist cancer drugs in Australia.

Early diagnosis

In the many conversations we have had with people living with brain cancer and their families and carers, we have often heard how long it was between the first appearance of brain cancer related symptoms and confirmation of a brain tumour, usually following an MRI scan in hospital. This is what we refer to as ‘time to diagnosis’.

While there is little evidence at this stage that earlier diagnosis impacts survival, there is general agreement that it has to be better for the patient (and carer) to get the earliest possible diagnosis: 

  • The tumour will, most likely, be smaller.
  • It will possibly be more accessible for surgery.
  • The risks of both trauma and treatment, such as surgery and radiotherapy, may be lower.
  • There are likely to be fewer genetic mutations so it might be easier to treat and more likely to respond to treatment.
  • While a diagnosis of a brain tumour is obviously an extremely stressful event, reducing the time to this diagnosis will reduce the stress of not knowing and trying to find out what is wrong.

To be able to reduce the time to diagnosis we need to have some benchmark data, so we can better understand the scale of the problem and set the goal we wish to achieve. Unfortunately, this sort of data is generally not collected in Australia. However, from UK data, we know that prior to recent advocacy around this issue, the average time to diagnosis was around 14 weeks, which was considered far too long. We also know that in the US is it currently around 6 weeks, which is a whole lot better, although ideally it would be a lot less than this.

Take our survey to gather data on time to diagnosis.

Headsmart

HeadSmart is a project from one of our international partners The Brain Tumour Charity in the UK. It has had considerable success in raising awareness of symptoms of brain tumours in children and young people to improve diagnosis. They have invited us to reproduce the content on our website. View it here.  

How you can help

As our campaigns progress, we will be calling on the brain cancer community to support in other ways, so please watch this space for new information.

You can help influence others -  from your social media network, to your local community, to the federal government -  to make real progress.  Get people talking about the issues around brain cancer. 

How will you help spread the word?

Share your story

At Cure Brain Cancer, we harness the strength of personal stories of patients, fundraisers, and researchers, to make a powerful case for the importance of finding a cure for brain cancer now. Read stories

Do you have a story that needs to be told?  We would love to read, see, or hear it. Submit your own story.

Contact Your Local MP 

If any of these issues or campaigns resonate with you please write to your local Federal and State MP expressing your perspective and support. Please email us a copy of your letter to: info@curebraincancer.org.au.  

Locate your local federal MP and their contact details here.

Key points to include in your communication are are:

  • Brain cancer kills more children in Australia than any other disease and more people under 40 than any other cancer.
  • Brain cancer costs more per patient than any other cancer.
  • Despite all of this, brain cancer receives less than 5% of federal government cancer research funding.

Tips to effectively communicate with your MP:

  • Be personal. Don’t worry about your writing style.  Being personal and authentic goes a long way.  Include why you care about this issue and why you think they should too.
  • Be polite
  • Include your contact details, particularly your address and phone number.
  • Hand sign letters