On March 26th and 27th the Unicorn Foundation joined together with 16 other cancer patient groups to lend our voice as consumers, to the Cancer Drugs Alliance Stakeholder Forum held in Canberra.
The groups represented at the Forum included 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.
Some key points out of the Forum were:
- This is the first time this breadth of stakeholders across our cancer community has come together.
During the two days, we challenged ourselves to address the urgent issues preventing Australian patients gaining timely access to cancer medicines. - We heard from local and international thought leaders and connected across a range of organisations and interest groups.
- The Forum reinforced to us the seriousness of the cancer challenge and the need for a more proactive collaborative approach moving forward. There was clearly a real appetite for moving forward with this agenda.
The key issues we explored were:
- How we ensure the consumer voice truly gets heard
- How we help inform evidentiary requirements, and
- How we shape a fit-for-purpose Australian system – one that is equitable, affordable and sustainable
From this, we uncovered real opportunities to start this effort, including:
- Getting genuine consumer input and more clinical expertise in the PBS listing process
- Increasing transparency from all stakeholders around decision making
- Shaping innovative approaches to speeding up access and funding
The CDA has committed to undertaking these next steps as a result of the Forum:
- Tap into the expertise and passion from all those who attended the Forum by asking people to commit to working groups that will move the agenda forward.
- The CDA will support this collaboration by:
- Sharing a high level summary of the Forum discussions and available presentations within the next two weeks.
- Launching working groups to take the early opportunities to the next level.
- Clarifying up front on how we will drive progress and allow an opportunity for all to engage.
- It is anticipated that there will be four working groups around the following priorities:
- Ensuring a meaningful and impactful public and consumer voice – this will look at such ideas as a community panel and cancer consumer representative on the Pharmaceutical Benefits Advisory Committee (PBAC).
- System improvement – looking at things like improving managed entry, tiering in the submission process, greater oncology clinical expertise in the process and improved transparency.
- Innovative access models – such ideas as adaptive licencing, provisional listing, flexible pricing and expedited approval.
- Reducing red-tape – by reducing administrative burden on healthcare professionals, proper data-linkage and reducing the number of PBAC submissions where possible
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.
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 http://medicinesaustralia.com.au/issues-information/oncology-industry-taskforce/
