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

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

Mr Andrew Giles

Media Release: 19 June 2017

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.”

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.

Mr Giles said, “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.”

For information about the Garvan Institute of Medical Research’s work focused on some of these neglected cancers, visit


* 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.


Issued by QUAY Communications on behalf of Garvan Research Foundation

For more information please call;

  • QUAY Communications, Cheryl Pettinau, M: 0424 157 714, T: 02 9386 9161
  • QUAY Communications, Emma Norgrove, M: 0499 688 001, T: 02 9386 9161


The Garvan Institute of Medical Research (Garvan) was founded in 1963 and is a world leader in gene-based medical research. It is a multi-disciplinary facility, pioneering study into some of the most widespread diseases of today (cancer, osteoporosis, diabetes, neurological and immunological disorders). Garvan researchers investigate the origins, diagnostic markers and most effective treatments of disease with the ultimate aim of prevention and cure.  One of Garvan’s greatest strengths is the extent of active cross-collaboration between the research areas and the consequent innovation this drives.



The Garvan Research Foundation was established in 1981 to provide fundraising and marketing support to Garvan’s medical research programs In addition to its fundraising activities, the Foundation's activities have since expanded to support Garvan with a Public Engagement Program. This initiative aims to increase understanding of the need for and importance of, Garvan's medical research across the broader community.

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 -

iii  As defined by Eurocare, the body that steers scientific activity and publication policy, advises on study proposals and maintains contacts between cancer registries and the coordinating centre in Europe.