“This is a moment in history” said Health Minister Greg Hunt MP, as he spoke at the launch of the ‘Rare Solutions: A Time to Act’ report at the CanForum in Parliament House, Canberra on Wednesday 9th August in front of more than 150 attendees including patients and their families, clinicians, industry, health economists and government.
The Rare Solutions: A Time to Act report comes at a time when the way we think about the traditional foundations of cancer care is evolving and speakers at the 2017 CanForum focused on delivering the Rare Solutions recommendations to improve access to clinical trials, data collection and its usage, and networks, which will increase access to affordable treatment options for rare cancer patients if adopted. The recommendations tabled in the report were developed in consultation with several key stakeholders, including clinicians, patients, health economists, the Australian Department of Health, the Pharmaceutical Benefits Advisory Committee (PBAC), the Therapeutic Goods Administration (TGA) and the pharmaceutical industry.
RCA was delighted to welcome both the Minister for Health, Greg Hunt MP, and the Shadow Minister for Health, Catherine King MP, to speak on the day and welcomed the bipartisan support for the PBAC to work on new processes for assessing ‘pan-tumour’ medicines and increasing funding to rare cancer research through the Medical Research Future Fund (MRFF). Specifically, the Minister announced that from 30th September $13 million from the MRFF will be used to help stimulate clinical trial and registry activity to achieve better health outcomes for people with rare or uncommon cancers and disease and that this would increase annually with MRFF expenditure.
With these announcements RCA’s Rare Solutions campaign is off to a flying start, but there is much to be done with all stakeholders in the coming months. Of particular note are the report’s immediate recommended actions:
- The Australian Government to invest more in local investigator led clinical trials for RLC cancers. This can be achieved through an equitable amount of national cancer research
- Funding to be allocated to RLC cancers research, based on estimates of total burden of disease (e.g. approximately 1/3 of cancer diagnoses). Currently $350 million is spent on total cancer research per annum, therefore it is recommended that at least $100 million be directed to RLC cancer research per annum to be more equitable. At least half of this, $50 million could be allocated to RLC cancer research through MRFF, Cancers Australia and NHMRC funding next year as a starting point.
- In the next year RCA will invite leading cancer researchers, the TGA, the PBAC and MSAC (where appropriate) to convene, discuss and agree a way forward for innovative trials and the potential to have more flexible study inclusion criteria, using current studies to guide the conversation. After this, all investigator led trials that include RLC cancers should be designed in this way.
- Through Medicines Australia, pharmaceutical companies to explore and develop a point of view over the next year on expanding global clinical trials (with local sites) to include more RLC cancer patients, and the parameters and incentives to make it possible. If appropriate, a working group is organised to support implementation.
- Pharmaceutical companies to use the TGA provisional registration process to list all relevant rare indications, listed in Appendix A, within the next two years.
- PBAC and local pharmaceutical companies to use a provisional/conditional process for all future rare cancer submissions where additional effectiveness evidence is required to support potential PBS listing.
- RCA to invite industry, the Department of Health, TGA, and the PBAC to help develop the principles and guidelines to prepare successful multi-indication submissions to enable successful use within a year (by August 2018).
- The Department of Health to engage internal (e.g. PBAC and the Australian Digital Health Agency) and external stakeholders (e.g. leading oncologists and patient organisations) to discuss and agree the approach and next steps to using My Health Record as a tool to capture patient outcomes for provisional TGA and PBS approvals.
- The pharmaceutical industry and the Australian Government to provide funding to establish the national leadership and collaboration network in 2017-18 and support RCA to lead the actions for recommendations 1 and 2.
- RCA to convene key stakeholders, in late 2017, to discuss and agree the national leadership approach and priorities including the potential way forward with the My Health Record. Discussions to ensure that all RLC cancer patients and their clinicians can utilise the My Health Record (or an appropriate alternative) in the future to build evidence, support research and provide information for a national registry.
We’re very thankful to everyone who attended the CanForum, those who watched online via our livestreaming, and everyone who was involved in supporting the launch of the report. We very much look forward to working together in the coming months to make a difference for all rare cancer patients.
To view photos from the day, click here