'Affirmative action' required to close survival gap

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Research and early detection are essential to close the survival gap for Australians living with rare and less common cancers. 

Appearing before the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates, in Sydney yesterday, Rare Cancers Australia chair Richard Vines described them as thefirst steps to improving patient outcomes.

According to Mr Vines, there has been marginal if any improvement in survival rates over the last twenty years for Australians diagnosed with a rare or less common cancer, who are twice as likely to die as those diagnosed with a common cancer.

Successes for common cancer have been impressive, due to government investment in research and treatment, leading to much higher survival rates. In contrast, funding for research and treatment of rare and less common cancers remains low. The lack of funding for treatment is a direct consequence of a lack of research, he said.

He called for affirmative action, with government playing a central role in directing funding towards research, and ultimately reforming the PBS to make funding more readily available.

On the PBS, Mr Vines questioned the narrow focus on cost-effectiveness in reimbursement decisions, comparing it to deciding to buy a car based solely on fuel economy. You really will miss a lot of additional and important benefits, he said, pointing to reduced side-effects and improved quality of life.

The people working on the PBS are doing a lot of work to make it better, he added. 

In relation to industry, he said companies made a simply calculation about seeking reimbursement, favouring larger patient groups that tend to have the supporting data required to successfully navigate the process. Aside from the financial investment required to make a submission, why make an application for something with little or no prospect of success. 

Mr Vines argued the experience with common cancers demonstrated the importance of early detection, and screening. He also suggested government consider funding patient participation in overseas clinical trials. 

Were not yet at the stage of curing cancer but maybe we can work towards making it a chronic condition, extending the time patients spend with families, and key to that is finding easy ways to repurpose already approved and funded medicines that can be effective in rare and common cancers,” he added.