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29
Nov
2017

Why the report from the Senate Select Committee into research funding for low survival cancers is such a big deal

Cure Brain Cancer Foundation's Barrie Littlefield with Senator Catryna Bilyk, chair of the Senate Select Committee. 

By Barrie Littlefield, Head of Engagement, Cure Brain Cancer Foundation

Yesterday was another landmark day for brain cancer in Australia. Following hot on the heels of the announcement of the Australian Brain Cancer Mission (ABCM), last month, this important report is very welcome.

“Why?,” you might ask. Surely we got what we wanted - a $50 million commitment from the Federal Government over the next ten years to double brain cancer survival.

Yes, it’s true, that is the essence of the ABCM, and as we said at the time, it’s a good start, but it’s no guarantee of beating this terrible disease. And the reality is that advances from research will come slowly. Quicker perhaps than we might have dared hope, and if the number and quality of research projects in Australia and overseas is anything to go by, you’d have to assume we’ll see an increase in survival soon. 

But the reality is, people living with and impacted by brain cancer need help now, and this report is very important in this regard.

With more than 300 submissions, the vast majority brain cancer related, this report sets down a marker. For the first time the brain cancer community has had a voice, and this cannot be erased. It is indelible and the momentum is growing stronger by the day. Politicians and other stakeholders can no longer say, “We didn’t know”. The truth is out, and action needs to be taken urgently.

When Cure Brain Cancer Foundation set its bold and disruptive mission to increase five-year brain cancer survival to 50 per cent by 2023 four ago, we realised that the nub of the issue was system change, on a number of fronts.

  • =        Changes to the way research was funded, focused and followed-through.
  • =        Changes to the way researchers were incentivised to share their data.
  • =        Changes to the way brain cancer research projects were managed.
  • =        The need for a national and global research strategy.
  • =        Reduction of duplication.
  • =        An increase in collaboration and re-setting of what this means.
  • =        Increases in grant duration, so researchers spend less time, writing and pitching for grant money, etc.

And that is just on the research front.

With regard to patients and their families and carers, the list was even longer.

  • =        Equitable access to new, effective treatments.
  • =        The right to try when faced with a terminal illness.
  • =        Acknowledgment and respect for a patient’s risk profile.
  • =        Availability of dedicated care coordinators for neuro-oncology.
  • =        Acknowledgment and help when treatment is finished (usually because there are no more options) even though the disease will likely recur.
  • =        The need to re-purpose medicines from other cancers and diseases.
  • =        Access to clinical trials.
  • =        Molecular testing reimbursed as standard of care, etc.

Again, the list goes on.

And through all of this, speed is of the essence. People need help now. They need new treatments now. For many, tomorrow will be too late.

The fact is, the ABCM is only the start. This Senate Select Committee report into Funding for Research into Cancers with Low Survival Rates effectively throws down the gauntlet to governments, health departments, hospitals, and primary care clinicians, across Australia to do better for people living with brain cancer.

The report does not cover everything, but there is more than enough in it to act upon. The challenge is now for that action to be taken – quickly. The twenty-five recommendations must be implemented.

For this to happen, the brain cancer community must keep up the pressure and build on this momentum. We need to hold those responsible to account.

Every day, I read stories and comments from those who’ve lost loved ones to brain cancer and those who are living with it now. A common thread often rings in my ears. “It will come too late for me, but perhaps not the next person”.

I truly long for the day when I no longer hear that - when people living with brain cancer see a marked improvement in services and a meaningful shift in survival, giving them the chance to live considerably longer, advocate louder for even greater change, and see a new treatment in their lifetime – a treatment that might, just might, rid them of this thing called brain cancer, once and for all.

The full suite of recommendations contained in the Senate Report can be found here.