Senate Standing Committees on Community Affairs Community Affairs References Committee Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer

31 August 2023


The Alliance welcomes the opportunity to make a submission to the Community Affairs References Committee’s Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers, including neuroendocrine cancer. The Alliance is the peak body for rural health in Australia. We comprise 47 national organisationsa and our vision is for healthy and sustainable rural, regional and remote (herein rural) communities across Australia. The Alliance is focused on advancing rural health reform to achieve equitable health outcomes for rural communities – the 7 million people residing outside our major cities. Our Members include healthcare and medical professionals, service and support providers, health and medical educators, healthcare students, and the Aboriginal and Torres Strait Islander health sector.

Rare cancers are those with an incidence of less than six per 100,000 population and less common cancers are those with an incidence rate of six to 12 per 100,000 population (inclusive).1,2 Other features of this group of cancers – which individually affect few people, but collectively add up to around 52,000 diagnoses per year – include affecting children, being diagnosed in a person much older or younger than usual, originating or being found in an unexpected site, being diagnosed later than usual, or being a small subtype of a common cancer.3 These cancers can occur anywhere in the body and examples include brain cancers, thyroid cancers, stomach cancers, pancreatic cancers, liver cancers, gynaecological cancers and osteosarcoma, among others.3 Rare and less common cancers comprise 30 per cent of all cancer diagnoses and result in half of all cancer deaths.

Given their rarity, research on this group of cancers is challenging and scarce. As a result, clinical management guidelines and treatment options are limited and outcomes are worse than for more common types of cancer.

A recent study, which performed spatial analysis of rare cancer data in Australia, found evidence of substantial differences in incidence and survival from rare cancers by geographic location and socioeconomic status – with more rural and remote areas, along with the most disadvantaged areas, having increased incidence and reduced survival.

When looking at cancer more generally, there are notable disparities in cancer incidence and outcomes by geography. The incidence of all cancers combined is highest for people living in regional areas. People living in rural Australia are more likely to die from cancer than their metropolitan counterparts, with the highest mortality rate for all cancers combined found in very remote areas.6 Rural people also have poorer survival rates after a cancer diagnosis...

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