Emily Mould: Senate Inquiry report highlights the inequities currently facing this population in Australia

Emily Mould, Head of Business Development at Children’s Cancer Institute, shared a post by Rare Cancers Australia on LinkedIn:

“Thank you Rare Cancers Australia for the great summary! It is great to see so many important recommendations in the report released following the Senate Inquiry into access to diagnosis and therapies for people with rare and less common cancers.

This report highlights the inequities currently facing this population in Australia (both adults and children), and suggests some key actions for the government to take to enable positive change and ultimately better health outcomes.

Lets look forward to hearing some positive follow ups and actions from the government to improve care for adults and children with rare cancers!”

Quoting Rare Cancers Australia’s post:

“Senate Inquiry report acknowledges significant inequity in experience and outcomes for people diagnosed with rare and less common cancers.

Today we welcomed the release of the highly anticipated Senate Inquiry 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.

Click here to see our full media statement with further recommendations supported by RCA noted.”

Source: Emily Mould/LinkedIn and Rare Cancers Australia/LinkedIn