In the first Neglected Cancers Awareness Week, Garvan Institute calls for improved outcomes for those affected by neglected cancers.

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The Garvan Institute of Medical Research today launches the inaugural Neglected Cancers* Awareness Week (19-25 June) and is calling on government, corporations, and the community at large to place a greater focus on less common, but high-mortality cancers – the ‘neglected’ cancers.

There are nearly 186 neglected cancer types, which currently account for a quarter of cancer diagnoses and nearly 40% of cancer deaths[i]. Just some of these include cancers of the brain, connective tissues, urinary, blood, male and female reproductive cancers, as well as mesothelioma, unknown primary and metastatic cancer.

Andrew Giles, CEO, Garvan Research Foundation said, “While mortality rates for common cancers have dropped over recent decades, incidence and mortality rates for neglected cancers are actually rising.  In fact, a patient with a neglected cancer is almost twice as likely to die as a patient with a common cancer. Garvan established Neglected Cancers Awareness Week to place a greater focus on the need for funding for research and clinical trials for patients with these cancers.”

There are a number of reasons for the high-mortality rates for neglected cancers. Generally, less is understood about neglected cancers which means that detecting and diagnosing these forms of cancer is more difficult. Standard treatments are also often less effective; and there is limited access to new therapies for people with a neglected cancer type.

However, technological advances mean that, increasingly, clinicians can treat cancer patients based on the genetics of their disease, rather than anatomically – or, where in the body the cancer has occurred.  This approach to treatment is commonly referred to as precision, or personalised, medicine.

Mr Giles continues, “Personalised medicine means patients are treated based on the genetics of their individual tumour, rather than where it is in their body.  This approach is resulting in improved outcomes, as well as often decreasing the debilitating side-effects of cancer treatment.  Here at the Garvan Institute of Medical Research, and elsewhere around Australia and the globe, personalised medicine is set to have a tangible and significant impact on ‘neglected’ cancers – but more research and more clinical trials are crucial if we are to realise the promise of the new approach. For that, we need more funding.”

“We need to raise awareness of the significance of neglected cancers. I believe that, with a greater focus on funding research and clinical trials, combined with our accelerating knowledge of potential treatments, we have the capacity to see the same improvements in outcomes for people with neglected cancers in the next 20 to 30 years as we have seen in other cancers over recent decades.”  Andrew Giles

Neglected Cancers Awareness Week is driving awareness of the two key barriers to improved outcomes for neglected cancers:

Access to clinical trials

The simple fact is that science works: basic knowledge from research and from clinical trials is needed if improved therapeutic options are to be offered to patients with neglected cancers. There is excellent evidence that participation in clinical trials is associated with better outcomes. The future of health care depends on breakthrough discoveries and treatments that come from research, including clinical trials[i].

Access to the best available treatments

Some patients can be treated with the same drugs as more common cancers, such as breast cancer. However, because these drugs have not been approved for use in the rarer cancer, they are not covered by the PBS, and patients are left to self-fund their treatment, often at a cost of thousands of dollars a month, to try to stay alive.

About Neglected Cancers

* Neglected cancers (or rare and less common cancers) are defined as cancers affecting up to 12 in 100,000 people.[ii]

Neglected cancers include brain cancers and cancers of the central nervous system; cancers of connective tissue (eg bone and soft tissue); thyroid cancer, adrenal cancer, neuroendocrine cancers (eg pituitary); ovarian, mesothelioma; urinary cancers – kidney, renal pelvis, ureter, bladder, other urinary organs; oesophageal, liver, stomach, gallbladder, small intestine, pancreatic, anal cancers; blood cancers – Hodgkin’s lymphoma, non-Hodgkin’s lymphoma, multiple myeloma and plasma cell cancers, acute and chronic leukaemias; male and female reproductive cancers; Kaposi’s sarcoma; cancers of unknown primary, and metastatic cancers.

 


Source: Garvan Institute

References:

i Garvan Institute of Medical Research, Australian Government Senate Committee Submission, 23 March 2017.

ii Rare Cancers Australia, ‘Just a Little More Time’, Update Report: https://engonetrca2.blob.core.windows.net/assets/uploads/files/JALMT%202016%20Update%20Report_electronic%20FINAL.pdf.

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