Liam Willis is the Executive Officer of the Gut Cancer Foundation.
As Executive Officer of the Gut Cancer Foundation, the stories highlighted by The Medicine Gap are all too familiar.
The passionate voices heard here represent the immediate, daily impact and heartbreak that the lack of funding has on New Zealanders. Some of the contributors have powerfully highlighted the need to self-fund treatments for rare diseases. Unfortunately, despite gut cancers being collectively the most common form of cancer in New Zealand, the situation is no different for affected patients.
In addition to bowel cancer, the group of cancer patients the Gut Cancer Foundation represents include those with some of the worst survival rates of any. Oesophageal, stomach, gallbladder, and liver cancer each have 5-year survival rates lower than 30%, whilst at just 12% pancreatic cancer has the lowest 5-year rate of all major cancers. Access to the best possible treatments is critical in addressing these stark statistics.
There is a continued and increasing gap between what treatments are available and funded for our patients in New Zealand, and what is available to patients in similar countries overseas.
Damon Jacobs, whose cancer journey is documented by The Medicine Gap, and the many thousands of other New Zealanders like him live with this life-threatening reality.
The powerful submission made to Pharmac by our colleagues at the Gastro-Intestinal Special Interest Group (GISIG) draws attention to the many treatments which would have a major impact if they were funded. The Gut Cancer Foundation appreciates their advocacy and wholeheartedly backed their calls for action with its own submission to the Independent Pharmac Review.
In addition, the Gut Cancer Foundation submission clearly highlights the impact The Medicine Gap has on clinical trials.
Clinical trials are fundamental to the future of cancer detection, diagnosis, and treatment. They are the final link in the chain of medical research, advancing discoveries made in laboratories into treatments that improve the quality of life for patients.
When the Gut Cancer Foundation was founded back in 2008, its sole purpose at the time was to raise funds to meet the serious funding gap for clinical trials for cancers of the digestive system. Driven by clinical expertise and personal experience the founding board members understood the vital role that clinical trials play in improving outcomes for all cancer patients.
Clinical trials are not about labs or test tubes; they are real life studies involving patients, and often produce major advances. They are the best way to define exactly which medications, surgical techniques and radiation treatments work best to help improve outcomes for patients.
The founders of the Gut Cancer Foundation understood that research and trials are imperative in changing this landscape and whilst its purpose has evolved over the years, funding clinical trials remains a key pillar of our work.
Clinical trials serve many purposes. They investigate and assess the impact of a specific medical intervention on a particular group of patients, whose cancers are carefully characterised by factors such as underlying driver genetic changes, and degree of spread. Trials can investigate new surgical techniques, medical devices, behavioural therapies, or screening and prevention strategies, but the majority in New Zealand (52%) are designed to assess new drug treatment options.
Clinical trials are often complex and involve a necessary myriad of protocols, ethical assessment, eligibility criteria and peer review. However, on a basic level, trials are asking a simple question…does this new (experimental) treatment option improve life expectancy, survival rates or quality of life when compared directly to the current treatment (standard of care), in a clinical setting?
It is this process that gives us the evidence to prove which treatments provide the best outcomes for patients, and therefore which treatments should be adopted as standard of care for a particular group of patients.
The benefits of clinical trials are numerous. The obvious being that patients enrolled on clinical trials can (potentially) access new treatment options, which are not yet otherwise available. Patients enrolled on clinical trials are also more closely monitored. But the benefits go much wider.
Evidence suggests that hospitals engaging in clinical trials provide a higher standard of care and better outcomes overall, giving benefits to a much wider group of patients. Clinicians involved in trials are gaining invaluable experience of delivering new treatments and the hospital establishes the necessary infrastructure and experience required to deliver the experimental treatment should it be shown effective and then be funded.
Despite the obvious benefits, New Zealand’s clinicians and researchers are operating in a very challenging funding environment that limits their ability to conduct clinical trials.
Whilst this is less of a problem with trials that are performed by drug companies trying to demonstrate the benefits of a new drug, there are many other studies looking at important questions developed by researchers that are not of interest to drug companies and so require funding from government and charitable sources.
However, the main research funding body in New Zealand, the Health Research Council, has a limited budget and therefore many quality research proposals don’t get funded.
These challenges are compounded by the increasing gap between what treatments are available and funded for our patients in New Zealand, and what is available to patients in similar countries overseas. There are excellent trials from Australia that can bring partial funding with them but need supplementing to open here in New Zealand. The Gut Cancer Foundation has a fantastic relationship with the Australasian Gastrointestinal Trials Group (AGITG) and our supporters have helped give New Zealanders access to several trials generated by this group.
However, all too often New Zealanders are denied the potential benefits because the trials are based on the availability of drugs in Australia that are not funded in New Zealand, making the costs of bringing the trial to New Zealand prohibitive.
It is not only patients that are impacted by The Medicine Gap. The Gut Cancer Foundation was established by clinicians. It is advised by a committee of talented practitioners and works closely with the GISIG. I have the honour of working along-side these groups and know first-hand that New Zealand is incredibly fortunate to have the talent and expertise we do.
In a recent conversation with a clinician close to GCF I asked them how they would sum up their job to which they replied, “we come to work each day to help people survive their cancer journeys better, and for longer”.
The reality is this group of dedicated, passionate, and incredibly talented people are being prevented from doing just that. Their reason for being is to provide the best possible care for their patients but they are operating with one, if not two hands tied behind their back with no way of effecting change. We cannot underestimate the impact this has.
As with all the stories in this campaign, treatments for gut cancers in New Zealand are lagging well behind what is available overseas.
What is deemed ‘standard of care’ in New Zealand is barely keeping up with what the World Health Organisation deems as ‘essential medicine’. Whether it is health outcomes or access to clinical trials, New Zealanders are suffering as a result.