Awareness day exposes hidden challenges, demands change for rare cancers

Pharma News: On Rare Cancers Awareness Day, stakeholders will convene at the National Press Club in Canberra to stand in solidarity with Australians diagnosed with uncommon cancers.

Last year, cancer claimed over 51,000 lives in Australia, with more than a third attributed to rare or less common types. Despite advancements in overall cancer survival rates, those facing these less prevalent cancers continue to experience significantly lower prospects. Survival rates beyond five years average just 62% for rare cancers and 45% for less common ones, contrasting sharply with 77% for more common cancers.

Rare Cancers Australia and Canteen undertook an analysis of the broader value of improving survival and quality of life for people living with non-curative cancer, as well as the burden caused by the death of a loved one to cancer. It found that over the course of five years, investment in new technologies, therapies, and services to extend the prognosis and quality of life of people with noncurative cancer can return $3.17 billion of social value.

In a recent interview with Health Industry Hub, Christine Cockburn, CEO of Rare Cancers Australia, discussed this year’s awareness theme and the organisation’s ‘relentless’ advocacy for meaningful reforms.

Reflecting on the highly anticipated Senate report on equitable access to diagnosis and treatment for rare cancer patients, Cockburn identified significant potential for meaningful reform in several of the 41 recommendations.

“The recommendations on access to medicines in the Senate report is very important as it is not acknowledged in other larger policy pieces, like the Australian Cancer Plan. One of the other things we were really pleased to see was the recommendation for a complete ban on discrimination against people based on their genomic data,” she emphasised.

“We don’t expect the response to the report from government too soon. It behoves us to keep our foot on the pedal and make sure that it’s responded to and implemented.”

Around 50% of all cancer treatments in Australia are delivered in the private sector. Associate Professor Christopher Steer, President, Private Cancer Physicians of Australia (PCPA), pointed to the significant challenges faced by the patients diagnosed with rare cancers.

“We know that patients with rare and uncommon cancers often face larger financial burdens than those with more common diagnoses. The PCPA will continue to advocate to reduce financial toxicity for all.

“We’re also deeply frustrated about patients’ lack of equitable and timely access to new and subsidised diagnostic technologies and ensuing innovative therapies. This is particularly so for Australians with rare cancers. We will hear from others about the game changers that are genomics and precision medicine. However, we know that if we find a rare cancer, the likelihood of an available treatment is much less and the costs of those treatments are often prohibitive,” Professor Steer stated.

Rare Cancers Awareness Day is a critical reminder of the often-unspoken challenges people diagnosed with a rare or less common cancer face, and the change families need and deserve.

For many patients, they face the reality of a cancer so rare, that nobody has ever heard of it, not even their doctor. They must navigate a complex health system with limited information and little support, and often face huge financial burdens. These individuals are left to feel isolated, scared and lost.

“What we know for certain is that greater support is urgently needed for those with rare and less common cancers. Too often this community is overlooked, put in the ‘too hard’ basket, meaning patients miss out on the critical care and support that every Australian should have access to.” Cockburn stated.

“The issues have been established and are well understood. We need action. We eagerly await the Government’s response to the Senate Inquiry; patients can’t afford to wait any longer.”

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