Message from the Chair, Professor Ian Davis

Welcome to this latest edition of “A little below the belt.”

Here’s a few things you may or may not have heard about:

• Penicillin • Smallpox vaccination (leading to monkeypox and other vaccines) • The first portable electrocardiograph • Treatment of bipolar disorder with lithium • Development of respirators • Discovery of how the immune system works • Development of life-saving drugs for cancer treatment • The bionic ear • Artificial heart valves

• Discovery of the bacterium that causes stomach ulcers • Discovery of risk factors for sudden infant death syndrome • In vitro fertilisation • Spray-on skin • Cervical cancer vaccine

Here’s a few more:

• Plastic surgery • Disposable syringes • John Clarke

All of those things in the first list (and many many more) are the result of research done by Australians. All the ones in the second list are from New Zealand, although Australia would like to claim at least one of those as its own. The population of Australia right now is about 27 million, which is about 0.3% of the world’s population, yet we produce 2.7% of the world’s research. Australia’s investment in research is 1.8% of its GDP, far lower than USA (2.9%) or China (2.4%). However, if you look over those partial lists, you’ll probably agree that what researchers produce in this part of the world is pretty impressive and literally life changing. And not only does it transform people’s lives, but it also actually shows a fantastic return on investment: every dollar invested in this research returns somewhere between 5 to 10 dollars in value for the wider community, in terms of better health outcomes, more efficient health care, keeping people well and productive for longer, and support for the economy overall.

Other countries are bigger and better resourced. Some pharmaceutical companies have resources greater than many countries. Why do we do so well in research in this part of the world? I think it’s because we approach things in a different way. We can’t throw endless resources or people at a problem; we have to work much more intelligently than that. In the case of medical research, this usually means bringing together the people who care for those affected by the conditions with the scientists doing the research (sometimes they’re the same people); and importantly, with the affected people themselves. That means we can better understand what the clinical needs really are, what questions the community needs us to answer, and what the clinicians and scientists can learn from each other. We can design research to answer those questions, and we can work with industry without having to take on their additional complications and pressure of having to develop commercial products for stock market and shareholder success. As Harry S Truman said, “It is amazing what you can accomplish if you do not care who gets the credit.”

ANZUP is the Australian and New Zealand Urogenital and Prostate Cancer Trials Group. We are a group of over 2000 clinicians, researchers, and representatives of the community, all involved in the care of people affected by “below the belt” genitourinary cancers (prostate, kidney, bladder, testis, penis). Collectively these cancers make up an enormous proportion of the total number of cancers in Australia and New Zealand. We are here to try to improve the lives of people affected by these cancers.

We know there are too many unanswered questions about why these cancers behave the way they do, and what might be the best ways to treat them and to look after the people affected by them.

ANZUP performs clinical trials to answer these questions, so that we can generate the evidence all of us need when making decisions for ourselves or our loved ones if we are affected by those cancers.

This is hard work, sometimes tedious, always time-consuming, frequently expensive. ANZUP members donate their time and expertise to make sure that the clinical trials we do are the best that they can be. We look for every opportunity to maximise the value we can get from a trial, and from the time / information / tissue and blood samples that people participating in these trials so generously provide. A clinical trial might be about testing a new treatment, but we also want to know answers to other questions: it’s more than “does this treatment shrink cancer?” We also want to know: Who is most likely to benefit? Who is least likely to benefit and should have some other treatment? Can we use known treatments more effectively? Can we study blood and tissue samples and see if there are any characteristics that match up with the clinical outcomes people experience on these treatments? Will these treatments be cost-effective and able to be used in broader clinical practice? What are the experiences of people affected by these cancers and receiving treatment? Are there better ways of supporting their needs? Are there special groups of people who might have very specific needs that would otherwise be overlooked?

We can’t all be experts at everything. I’m a medical oncologist and can barely tie my own shoelaces; you don’t want me doing your surgery, I’m probably pretty average at providing psychological support, and my lab staff get nervous when I pick up a pipette. We need all types of health care experts involved in design of these trials, just as we do for the best clinical care. Most importantly, I don’t have one of those cancers (yet; as far as I know), so I don’t have the personal lived experience of knowing what it’s like to have one. People like that are experts too, and ANZUP is very fortunate to have a great group of community representatives to advise us and steer our scientific direction. In fact, we are just about to start a new project based on an idea that came from one of our Consumer Advisory Panel members.

My unsympathetic and brutally honest mirror also tells me that we are all getting older, and the individuals involved won’t be doing this forever. ANZUP also looks for ways to support new people entering the research field, with practical support such as scholarships, prizes, grants, travel fellowships, and educational and training programs. We look for ways to involve any interested ANZUP members in the development and conduct of our research. Our Below the Belt Research Grant program, supported by ANZUP’s fundraising initiatives, has provided since 2014 over $1.96M in grants and funded 36 research projects that otherwise would have had no support, many of which have then led on to ANZUP trials. A lot of these grants have gone to early career researchers.

And it’s paying off. ANZUP is leading or has been involved with over 20 clinical trials. Our trials have included over 7000 participants from nearly 700 sites around the world. One of our trials swept the pool of awards from the Australian Clinical Trials Alliance in 2020, winning Trial of the Year, as well as awards for the statistical quality of the research, and (we love this) for consumer engagement. We continue to develop and lead clinical trials that will help us all understand these diseases better and provide better treatments and support. Our work is being recognised on the global scale as being important and transformative.

But, like I said, clinical research takes a lot of time and a lot of money, and the sort of work ANZUP does could not happen without the extraordinary donations of time and expertise from its members. There are no free handouts. We have to find the resources to do every clinical trial we do, as well as keeping the lights on. We go through competitive grant application processes, but these can take up to a year for outcomes to be known, and the probability of getting grant funding in Australia is less than 10% even for work rated as “excellent” by the grant reviewers. We work with industry, making sure that the trials are designed, led, and overseen by ANZUP. And we are a charity registered right across Australia and New Zealand, allowing us to raise funds that all go back to supporting research; the actual costs of doing the fundraising are not paid for by the donations.

I’m amazed that you’ve read this far, but if you have then you’re either way more bored than you thought you were (sorry if I didn’t help with that), or more likely that you have some sort of personal interest in all this. Perhaps you or someone you love has been affected by one of these cancers. Perhaps you’ve been the beneficiary of research (almost certainly – look at those lists again). There are many ways that you can help. You can raise awareness of the importance of these cancers. You can encourage people to support and participate in research, including clinical trials, where they will get the best possible care available. Perhaps you’re thinking that you might be willing to donate to ANZUP or to participate in one of our fundraising activities, like a Pedalthon or #YourWay or one of the other initiatives you will read about in these pages. We would love to hear from you!

Maybe you’re thinking that anything you could contribute is too small to make a difference, in which case I have to close with a quote from the Dalai Lama: “If you think you are too small to make a difference, you haven’t spent the night with a mosquito.”

Let’s join together and show these cancers what determined mosquitoes can do.

Please enjoy this edition of “A little below the belt.”

IAN DAVIS

CHAIR, ANZUP