March 28, 2014

Cancer groups unite to place patients ‘front and centre’ in funding of new medicines

Cancer Drugs Alliance Stakeholder Forum, Canberra 26-27 March – activates new ‘spirit of collaboration’

 28th March 2014: With representatives of the Nation’s cancer community coming together for the first time in Canberra this week to discuss future timely and equitable access to new medicines –  Australia’s cancer consumer organisations attending the two day Forum (sixteen in total) are now calling for greater representation and involvement of cancer patients moving forward.

“This unique meeting has facilitated unprecedented discussions and a sharing of information and knowledge,” states Glenda Colburn from Lung Foundation Australia. “The consumer organisations in attendance, representing Australians living with cancer, are all acknowledging there is a critical need for us to now unite on this discussion and work together in a collaborative way to support change both in the short and long-term – for a better future for Australians affected by cancer.”

The groups represented at the Forum include Bowel Cancer Australia, Brain Tumour Alliance Australia, Breast Cancer Network Australia, CanSpeak, Melanoma Patients Australia, Cancer Voices, Leukaemia Foundation, Lung Foundation Australia, John Logan Cancer Treatment Foundation, Lymphoma Australia, Unicorn Foundation, Myeloma Foundation of Australia, Palliative Care Australia, GI Cancer Institute, Australian Thyroid Foundation and Rare Cancers Australia.

“This Forum has uncovered amidst the wide range of discussions, a critical need for a co-ordinated and concerted effort by consumer organisations to ensure that patient needs are always foremost in the minds of those determining what treatments should be funded,” adds Glenda Colburn. “The Forum was also of one voice in demanding a more transparent and easily understood process. So if a patient is to be denied funding for their treatment it’s important that they can easily understand why.”

The consumer groups represented at the Forum are calling for four key priorities – as an immediate next step:-

  1. A greater representation of patients/the public within the access decision-making process.
  2. Increased education of relevant patient groups around the processes and requirements – so they can actively participate and understand the processes in more detail.
  3. A greater investment by patient groups, and all relevant stakeholders, to work together as one to improve the system.
  4. Greater transparency with the processes – to show discussions and decisions more clearly to patients/the community.

About the Cancer Drugs Alliance

The Cancer Drugs Alliance is a not-for-profit multi-stakeholder organisation committed to achieving the best outcomes for Australian cancer patients. Membership comprises individuals and organisations, including practising oncologists, haematologists, cancer patient support groups and advocacy organisations, and pharmaceutical companies currently providing cancer treatments to the Australian community.

More about the CDA Stakeholder Forum

The Stakeholder Forum united the entire cancer community for the first time – with representatives from patient groups, oncologists, haematologists, nurses, pharmacists, politicians, policy makers and industry coming together with the common aim: to give all Australians living with cancer their best options to manage their disease.

The Forum was hosted by the CDA and supported by a large number of organisations including Bowel Cancer Australia, Brain Tumour Alliance Australia, Breast Cancer Network Australia, CanSpeak, Cancer Council Australia, Leukaemia Foundation, Lung Foundation Australia, Medicines Australia, Rare Cancers Australia, Unicorn Foundation, Australian Private Hospitals Association and the GI Cancer Institute.

It follows on from the release last year of the Deloitte Access Economics report, Access to cancer medicines in Australia, and the 27 subsequent submissions received in response to the report from stakeholders. A copy of the report and submissions is available at

For more information about lung cancer, click here.