Rare Cancers Australia (RCA) has welcomed the release of the highly anticipated Senate report into equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancers.
RCA CEO, Christine Cockburn, said she was reassured to see that the report, containing 41 recommendations, was a true reflection of the high unmet needs faced by Australians living with rare or less common cancers.
"RCA broadly welcomes the recommendations of the report, in particular several of those that echo the key advocacy asks we’ve been championing for many years now,” Ms Cockburn stated.
“With the Health Technology Assessment (HTA) Review report complete and sitting with the Minister, it was great to see the recommendation (10 3.134) for the Australian Government to utilise the HTA Policy and Methods Review to provide Australian rare and less common cancer patients with timely and affordable access to novel medicines.
“It was also encouraging to see a recommendation (7 2.153) supporting further investigation into opportunities for genomic screening and profiling for patients. This is in direct support of our Rarefication report recommendation for a coordinated national genomics strategy that ensures all people diagnosed with cancer have access to comprehensive and cost-effective genomic profiling as standard of care.
“One further recommendation (38 6.83) that particularly stood out was one that reflected an announcement in the Federal Budget last week, for a review into the Government’s evidentiary standards specifically for rare and less common cancer clinical trials to consider accepting real-world evidence and greater uncertainty in data where appropriate.
“Clinical trials are all too often the standard of care for rare and less common cancer patients, including those with neuroendocrine cancers so streamlining access to treatments and overcoming unnecessary barriers is a welcome initiative.
“This inquiry and the resulting recommendations demonstrate a commitment and consensus across multi-sector stakeholders acknowledging that those diagnosed with rare and less common cancers face significant inequity in experience and outcomes. RCA looks forward to following up on progress and implementation as a matter of urgency,” she concluded.
Other recommendations endorsed by the national rare cancer charity included:
- Recommendation 1 2.128 The committee recommends that the Australian Government further develop clinical guidelines and local pathways for rare and less common cancers and ensure that they are accessible and available for general practitioners at the point-of-care.
- Recommendation 12 3.136 The committee recommends that the Australian Government adjust regulatory processes to broaden indication coverage for medicines that treat rare and less common cancers, including neuroendocrine cancer.
- Recommendation 26 5.132 The committee recommends that state and territory governments reform patient-assisted travel schemes with a view to: □ create more consistency in scheme offerings across all jurisdictions; □ increase financial assistance; and □ expand schemes to include travel and accommodation costs for clinical trial participants.
- Recommendation 34 6.67 The committee recommends that the Australian Government ensure continued funding for rare and less common cancer projects to reduce existing research and clinical trial disparities.
- Recommendation 16 3.149 The committee recommends that the Australian Government work with state and territory governments to implement the One Stop Shop and National Clinical Trials Front Door platform as a matter of priority.
ENDS
Media Contact
Alicia Ballesty, Head of Strategic Communications
Rare Cancers Australia
Alicia.ballesty@rarecancers.org.au
0499880742