Neglected Cancer Awareness Week 19-25 June


This week is Neglected Cancers’ Awareness Week – bringing attention to those rare and less common cancers that are collectively responsible for 1/4 of all cancer patients and have high mortality rates.

It is great to see that rare and less common cancers are starting to get the recognition they deserve.

This awareness week follows on from the Senate Inquiry into ‘Funding for Research into Cancers with Low Survival Rates’ which, as previously reported, the GI Cancer Institute and its Consumer Advisory Panel provided a submission to in May.

As presented to the Inquiry, Gastro-Intestinal (GI) Cancers have some of the lowest 5-year survival rates.

The GI Cancer Institute is particularly invested in neglected cancers as Gastro-Intestinal (GI) Cancers account for 3 of the 8 cancers with the highest mortality rates (>70%) – pancreatic, – liver & – oesophagus

AND 6 of the 12 cancers with the lowest 5-year survival rates (<30%) – pancreatic, – liver, – oesphagus, – stomach, – gallbladder & bile ducts – other digestive organs. *

The GI Cancer Institute is actively supporting vital clinical trials research into these neglected and rare cancers affecting the Gastro-Intestinal tract.

The good work that has been conducted by way of clinical trials research over the past 20+ years has delivered improvements, as evidenced by an increase in survival rates, but more needs to be done to lift the overall 5-year survival rate above 50% and ideally closer to 90%+, similar to what has been achieved for breast and prostate cancer.

Greater funding is a critical component to achieving these changes. Right now rare and less common cancers only receive 13.5% of all research funding. Rare and less common cancers also only received 12.6% of funding for treatments through the Pharmaceutical Benefits Scheme (PBS).  This can make the treatments that are available unaffordable to those diagnosed.

One of our survivors Sarah knows this all too well and has become an advocate for increased funding for both research and treatment of rare and less common cancers. Having survived for 20 years with GIST Sarah is in a race against her own body, requiring a new drug every few years to fight the gastrointestinal stromal tumours that erupt in her small bowel and liver. You can read more about Sarah’s journey and how participating on an AGITG Clinical Trial provided hope for her and her family HERE.

You can also read more about her in a recent SMH story “‘The wrong cancer’: Pharmaceutical Benefits Scheme failing rare cancer sufferers” HERE.

What have we recommended?

In light of this, we have made the following recommendations in our submission to the Senate Inquiry into ‘Funding for Research into Cancers with Low Survival Rates’:

  1. Define “low survival cancers”.
  2. Annual Commonwealth funding targets could be set: e.g. for 30% of cancer funds to be allocated to funding studies into low survival rate cancers, provided the high quality criteria of the funding program is maintained.
  3. Establish transparent, routine reporting of the incidence and mortality of rare cancers as a subset of low survival rate cancers, as well as transparent, routine reporting of funding allocations to low survival cancers. Monitoring and regular reporting is needed to know if we are achieving any change (and return on investment of any new funding models).
  4. Under the Australian Medical Research and Innovation Strategy provision should be made for the 2019 ‐ 2021 Priorities to specifically address international (and local) collaborative research into low survival rate cancers.
  5. A sustained focus on ‘low survival cancers’ will be required to achieve enduring change to these rare or ‘difficult to treat’ cancers. Cancer Australia should be tasked with developing, implementing and maintaining a National Cancer Research Plan which among other research matters provides specific reference for implementing strategies to address “low survival and difficult to treat” cancers.

For a copy of the complete submission click here.


* Source: The Australian Institute of Health and Welfare (AIHW) 2017 Report “Cancer in Australia”