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Select Committee into Funding for Research into Cancers with Low Survival Rates
Impact of health research funding models

LEYDEN, Ms Simone, Chief Executive Officer and Co-founder, Unicorn Foundation

CHAIR: Welcome. Thank you for talking to us today. The committee has received your submission as submission 101. Would you like to make a brief opening statement before we go to questions?

Ms Leyden : Thank you for the opportunity to represent our organisation, the Unicorn Foundation, and all Australian neuroendocrine tumour, or NET, cancer patients. Special thanks to you, Senator Catryna Bilyk, for bravely shining a light on the importance of research in low-survival cancers based on your own experience. Often we do not know what we do not know. Once an experience personally affects you and you are faced with the inequities of having a less common cancer, you are forced to stand up for yourself, your loved ones and your fellow Australians.

In 1998—after a routine arthroscope on his knee while studying for his year 12 VCE—my youngest brother of five siblings was diagnosed with a rare genetic condition called Von Hippel-Lindau or VHL. The doctors came to their conclusion after many tests conducted after they nearly lost him on the operating table. What has followed are years of operations to remove adrenal tumours, pheochromocytomas and the very dangerous hemangioblastomas from his spinal code and brain stem. These operations have been a constant in his life. Only last year, at the age of 35, did he have cutting-edge Gamma Knife surgery in San Francisco on his brain as part of his ongoing treatment to keep those tumours at bay.

The impetus for the Unicorn Foundation, launched in 2010 by my brother, Dr John Leyden, and me, however, did not come until after the tragic death of our sister Kate to pancreatic neuroendocrine cancer at the age of 35 that had also gone to her brain. Diagnosed five years earlier, at the age of 30 with pancreatic NETs and over 20 liver metastases, our tight-knit family was once again rocked. How in a healthy family could two siblings be affected with such rare conditions? There is now a known relationship between the two with 20 per cent of VHL patients developing pancreatic neuroendocrine tumours, but much more research is needed.

What we experienced with our sister Kate's diagnosis in 2005 was a lack of awareness in the medical community and few to no local resources or support services, forcing Kate to travel globally to seek out advice from leading experts in Sweden, the UK and America. We are happy to report that the care that she did receive on our return from her team at Peter Mac, who are now colleagues of the Unicorn Foundation, was world-class. Those experts she also sought in Europe now actually sit on our research advisory panel of the Unicorn Foundation.

I am happy to report also that Australian treatment and expertise has very much advanced in the last seven years. That feeling of isolation, however, was heightened in everyday visits to specialists when resources, seminars, fundraising and specialist nurses in pink shirts surrounded other patients, yet my sister just got a confused look when she told people what she had.

We knew that the system had to change, because there would be others like her out there, and we needed to bring them together to support them, give them correct information, raise awareness about NET cancers and their symptoms, and lobby for greater access to better treatments. The most important piece of this puzzle, however, is research. We know that the barriers are too small patient numbers for the types of randomised clinical trials that fit our current evidence based guidelines that clinician and regulatory bodies can defer to, however, with advancement in personalised medicine, not many cancer tumours are broken down into smaller subtypes to determine the best genetic-targeted therapies.

Are common cancers now becoming rare? The greatest advancements we have seen in the survival of patients with breast and bowel cancers are early detection and screening. Much of this world-class research was led by Australians and, only recently, we saw Australian-led research out of Melbourne university in collaboration with the US and European teams find a breakthrough in the genetic sequencing of pancreatic neuroendocrine tumours with the presence of the BRCA2 mutation amongst others. If NET cancers were to get the government funding of those more common cancers, we too could have breakthrough research, like this, that could lead to identifying patients at an earlier stage with earlier detection. Thank you.

CHAIR: Thank you. In your submission, you talk about centres of excellence and how one is opening soon at Peter MacCallum Cancer Centre. Can you tell the committee the benefits of centres like that and why it is so important; and maybe how they operate and, for NET patients, what benefits there might be.

Ms Leyden : Absolutely. We have done a lot of global research with our other fellow patient groups around the world, and we definitely see that there are better outcomes for patients who are seen within a centre of excellence—a centre of excellence being where they actually have, in our instance, neuroendocrine tumour multidisciplinary team meeting so their cases are discussed across the gamut of different specialists that our patients have to see from endocrinologists to surgeons and nuclear med physicians. All sorts of different treatments are available to neuroendocrine patients. I say there are so many different options available, but they are not necessarily curative nor do they all work. But, what we see, as I said, is that patients who are seen within a centre of excellence have much better outcomes, be that a longer progression-free survival and maybe also better care because it lessens the isolation and they have the resources available to them.

We have identified, say, five—one in each state around the country. We identified them because they can provide the whole range of different treatments for patients, especially around nuclear medicine. Overseas, in Europe, through the European Neuroendocrine Tumours Society, they actually have an accredited centre of excellence program that is world-class. It is there that we are seeing the Peter MacCallum Cancer Centre, for instance, looking to be accredited under that system, which is very exciting because it would be the first time outside of Europe that a centre would fulfil that criteria. Obviously, the main advantage also with centres of excellence is that that is where the clinical trials are happening. They are seeing more patients, so there is more experience there, and there are also more opportunities for patients to get different options as well.

The problem, obviously, is that most of those centres are located in metro areas, and we see a huge burden for regional patients. We run a NETs patient support line, which is just our nurse who works very hard three or four days a week on the telephone, and we see that about 40 per cent of those calls come from regional areas. So what we would foresee is, yes, those patients still need to be actually funded or helped to go and be seen at these centres of excellence to have their cases discussed through the MDT. But, ideally, what we would like to see is a buddy system, if you like, where their treating oncologists in their regional areas are in full communication with these centres of excellence so that these patients can still live with their family and their support systems within their home towns as well. That is currently not really happening, but that is something that we would like to implement.

CHAIR: The idea of a buddy system is interesting. It makes me think of the question: do you think that patients get enough support when they are diagnosed and as they travel through their journey with NETs?

Ms Leyden : The answer is still no. It really falls, still, to our organisation. We are a lean machine, with myself being the only full-time person. We run it nationally. We also started the Unicorn Foundation New Zealand as well because so many New Zealand patients were coming over for treatment in Australia. So they are not getting enough support. We also did a recent study that looked at the unmet needs globally of neuroendocrine cancer patients. One of the interesting things that came out of it was that 86 per cent of patients believe that their needs were not met at the time of diagnosis with the resources and information that was available, whereas, when we surveyed the clinicians, 86 per cent of the clinicians felt that their needs were met and that they had been given the information. So obviously there is a huge discrepancy there, and they are relying predominantly on patient organisations.

We have a booklet. We produce one for healthcare professionals and one just for patients as well. If they are seen at a centre of excellence, they are generally given this booklet to take back to their GPs because, again, this is a disease that is very, very individual. Every single patient is different. That obviously provides barriers for doctors because, when a pancreatic neuroendocrine cancer patient comes to them with the disease spread everywhere, due to the grading of the tumours, that person does not have the same treatment regime as a person who has pretty much the same disease that has not spread as much. There are all sorts of different cases. It is a very, very diverse disease and one that is very, very complicated—as are all cancers, but this one seems to be very, very challenging. So there are barriers for doctors, but, with greater resources, we can come up with the resources. We talk and we work with our colleagues who are clinicians, but we have also put together a consumer advisory group of about 12 patients from around the country that looks at all of our resources now. They are beautiful volunteers; they are very intelligent people. They reassess our resources so that we can get them out, but it is relying on a small organisation like ours to try and touch every single neuroendocrine cancer patient out there who is still not seen in these centres of excellence either. We can only really communicate properly with them.

CHAIR: Did you develop that booklet yourself?

Ms Leyden : Yes, we did.

CHAIR: Do you get any government funding?

Ms Leyden : No. We did receive a one-off grant from Minister Ley to help with the production of that. That was back in 2015.

CHAIR: How much was that for?

Ms Leyden : $130,000 for one year. In that time, we not only funded the nurse but we also held six webinars that were for healthcare professionals. We also educate healthcare professionals—mostly nurses, but also GPs—so we are looking at how we can develop portals, all sorts of things, for GPs. Yes, it was a one-off grant that, sadly, did not go too far. We over delivered on that, we really did. We produced, as I said, the booklets, but even postage—we try to make all of our things available online and downloadable, but obviously there is upkeep for the website and our database. We have now implemented a database based on that grant. Our nurse puts all patient data that comes in through our helpline on it, and that is really useful for studies. No-one else is really—you would have heard along the way the registries are not sufficient, and so we decided to take this upon ourselves. We have about 500 patients in that; we have all of their full details.

CHAIR: You mentioned in your submission about the need for electronic health records, that they need to be advanced and maintained to assist in this area. How important do you think that is? What are the areas or the concerns you have got at the moment with regard to it?

Ms Leyden : It is critical, because we are seeing that neuroendocrine tumours are definitely on the rise. Previously it was considered a rare cancer, but we know that now it has stepped into that less common cancer bracket and yet we are still relying on very outdated data. We are even all relying on SEER data from America for that. We saw recently in the UK that the UKI NETS, the neuroendocrine groups there, re-look at how they could work out how to do a proper registry around NETs. But it was also about the coding of neuroendocrine tumours. Because we cover the whole endocrine system, we cover from brain to ovaries to everything, it is a very difficult one to code, if you like. They are trying to get all of that into gear, and they are seeing that where they thought the incidents were 3,000 a year, it is probably up around 15,000 a year. We might see that once we actually get all this coding together, our incidents will probably be up there around 10,000, where we think currently it is about 1,800 to 2,000. So there is a lot of burden there, just with the lack of registries.

We do have great organisations and, as I said, these hospitals work so collaboratively together. We are very proud of our neuroendocrine clinicians. They do work very, very closely together, but still there is not one uniform registry across any of those institutions either. They are all silos. It is a frustrating thing for everybody.

CHAIR: Senator Bushby and I are from Tasmania, so how would someone in Tasmania find out about your booklet?

Ms Leyden : They would probably google. They would google, or generally do—we have just run a NET patient forum in Hobart because we have a lot of patients in Hobart. We actually have a lot of patients—neuroendocrine covers a number of different spectrums. A lot is genetic, as I mentioned with Von Hippel-Lindau. We have MEN, and we have a lot of MEN patients in Tasmania—MEN being multiple endocrine neoplasia. None of ours are very sexy; they are very difficult to say.

CHAIR: No, none that we have heard from have been very sexy!

Ms Leyden : After a coffee, it comes out quite quickly. We are seeing that even with our friends in Tasmania—they are generally seen at Royal Hobart Hospital, but for treatment such as peptide receptor radionuclide therapy, which is a treatment that we are really looking to fund and I think you would have seen that in my submission under our CONTROL NETs study, they are sent to Peter Mac. We work with Peter Mac very closely, and our booklet is given to patients when they arrive.

The thing is though, we are running all sorts of studies and research. There is one in particular that we are endorsing out of Peter Mac and out of different hospitals that is looking at functioning and non-functioning patients. Some patients have a lot of diarrhoea and asthma and symptoms—hence, why it is difficult to diagnose because they are very common symptoms—and some do not have any symptoms at all. There are psychosocial issues around patients who do not have any symptoms and patients who have a lot. We are trying to recruit out of these different institutions, but we need to recruit those patients within six months of diagnosis. Generally, these centres are secondary—we encourage everyone to get second opinions, so we are missing things like that. Look, that is a whole other thing about recruitment onto different trials because you miss them in that first initial really time-poor protocol section of the trial. A lot more needs to be done even in trying to bring in different hospitals in Tasmania and all those sorts of things as well.

Senator HUME: Why is there that six-month cut off? What is the magic about six months?

Ms Leyden : I am second-guessing here, but I guess it was the protocol and the way they set it up. But it could also be that some patients go from non-functioning to functioning, so I guess they are trying to find out what is going on there as well.

Senator GRIFF: On trials, what is the optimum trial size do you believe? I know that is a wide question, but in context: we had a witness in Sydney who was being treated at Royal North Shore, and she explained how fortunate it was for her to get onto a trial which was limited to only 12 patients. As NETs are quite rare, would you want to get everybody on a trial? Is it possible to get a larger number into trials?

Ms Leyden : I do not think it depends on the number of patients that are there, I guess it is the protocol of the trial and what question the trial is actually trying to answer. For instance, I can speak with some knowledge about the trial that we are fully funding at the moment, which is CONTROL NETs. CONTROL NETs is a three-arm trial that is looking at comparing chemotherapy with PRRT—the peptide receptor radionuclide therapy—and then the combination. This is a trial that, globally, they want the results of, because this particular trial is not being done anywhere else. At the moment, through funding from ourselves, we have 48 people on that trial around the country.

Senator GRIFF: That is the PRRT?

Ms Leyden : Yes. This is a trial that is up and running. We are probably about to invest more money into that to get it to 72 people, so that we can have some publishable interim results. So 72 people on a very stringent, randomised trial provides a decent amount of evidence for that.

In other trials, when you are looking at really targeted therapies like immunotherapies and that sort of thing, I guess your patient numbers are small. Interestingly, the other trial, and when you are looking at numbers around the 12 mark—another subset of neuroendocrine is neuroendocrine carcinoma, which is grade 3 and very, very aggressive. The only treatment that is available for it at the moment is a standard sort of chemotherapy. We seed funded a trial called NABNEC, which we were happy to see actually did receive NHMRC funding probably because there are no other treatments available—and later we can go into the different criteria that need to be met within NHMRC. But what we are seeing now is the difficulty in the recruiting onto this trial. We know the patients are out there, but, again, if a patient goes and sees an oncologist who is not in a centre of excellence, say, then they will straightaway be put on whatever the guideline says, which is this chemotherapy. Again, obviously, this limits them to be on the other trial.

I had an experience, which, again, just shows where foundations like ours can come in. I had an experience where a colleague—I dealt with her pharmaceutical company—told me that her aunty had been diagnosed with this neuroendocrine carcinoma that morning. Her oncologist had said, 'We'll put her into hospital and we're going to start chemotherapy.' She rang me and I said to her, 'How sick is your aunty?' She said: 'She hasn't been sick. We've just found this out and now it's all through her body and she's got months to live.' I said: 'Okay, can you wait 24 hours? Can I make some calls, and let's just see if we can get your aunty on a trial. Did you ask if there were any trials available?' 'Yes, but we were told there were no trials available.' We literally got her out of hospital that day.

Luckily, the principal investigator had just got back from overseas, and I was able to make a call to him. He got her in the next day, and she is now on that trial. If she had literally waited another 24 hours, she would not have been eligible for that trial. So, from that—and we had already planned it; we have done the first lot of filming last week, including her as well as the principal investigator—we are doing a video about this specific trial to try and help promote it, as a vignette, to all oncologists, and we will see whether we get it out to COSA. We are working with AGITG, Australasian Gastro-Intestinal Trials Group, on this trial, so they will host the video as well. But we are still struggling—it is great to get the research up and going, but you need the recruitment too, especially in this rare area where, unless they are an expert, again, in a centre of excellence, they will not know about the trial.

Senator GRIFF: We have heard in the past that 30 per cent of trials just do not have anyone on them—

Ms Leyden : Which is just devastating.

Senator GRIFF: which is a massive amount. Can I go back to NHMRC and PRRT. You actually quote in your submission that it is effectively the golden drug, but you state that there is a different cost faced by patients based on the state they live in. There is New South Wales government-approved funding for patients in New South Wales; however, in Western Australia, it would cost $40,000 per cycle. What reasons are you given for rejection by NHMRC in relation to this?

Ms Leyden : It is interesting. I have spoken a lot with the principal investigator on this, because the problem is it has gone up three times, and we have had different assessors at—

Senator GRIFF: This is over a short period or this is over—

Ms Leyden : This is since 2014, and we have had different assessors each time. One rejection that comes to mind is—and I guess why some of the guidelines that we are hoping through the latest federal health department will change with the Medical Research Future Fund—because of the experience of the researchers. When you are looking at patient groups—and clinicians in this area have only really become part of it, say, in the last 10 years, when it has become a bit more prominent, and they have more patients and there have been these centres of excellence, if you like, set up.

Interestingly, some of the same investigators on the NABNEC study that got approval were on the CONTROL NETs study, and one of the arguments was that the CONTROL NETs people did not have the experience—but they are the same ones, so there are discrepancies there. They also questioned the patient numbers—which, again, I guess, without having proper registries, they can legitimately do. But, we know, in real-word world evidence, that is not the case: we do have the patients for it.

The way the PRRT is set up is that it is not a pharmaceutically-backed drug, but we are lucky that, out of ANSTO, lutetium, which is one of the key components of this, is produced here in Australia. Again, one of the first times we were able to lobby for it was one of the first times outside of Europe. It does not have the evidence behind it. There is a lot of anecdotal evidence—and we have been doing it for 10 or 20 years—and we have seen patients and we have seen the reduction. I can show you many scans of patients, who are riddled with cancer, who now have a small amount of burden of disease and are living fantastic lives. I know that, if you had any of the clinicians or the nuclear med physicians from any of those hospitals, they would be able to tell you that. But, without the large randomised clinical trials, obviously, it is more difficult. Somehow it has been able to be funded, state by state, hospital by hospital. In WA, because this particular trial is only for pancreatic and GEP-NET—so gastrointestinal—they have to be grade 1 or grade 2 and show disease progression, so with this particular treatment you have to get sick before you can actually get on the trial.

But what the trial has done is actually brought it a bit closer to the grade 1. Generally, it is when only you have disease progression that you get it without being on the trial. Unfortunately, what we are seeing in WA is that unless they are eligible and meet that protocol to get on the trial there are a lot of patients out there who PRRT would work for and who would still get treated in the eastern states, but because they cannot get on the trial they are actually having to pay for it in private institutions over in WA. That is not the case in New South Wales, South Australia, Queensland—

Senator GRIFF: That is a major, significant cost.

Ms Leyde n : It is also the question of why they should be disadvantaged by their postcode, where they live or the resources that are available. That is something that we are lobbying very hard for in WA. I have presented this particular argument about, say, centres of excellence to Minister Hunt. This is a treatment that has been really successful here in Australia and in Europe. America is now coming on board and we will probably see FDA approval there before we ever see TGA approval here! They will actually advance ahead of us, after us leading the way for the last 20 years.

We hosted the Theranostics World Congress last year, along with our nuclear med friends. Because no-one else would host it, the Unicorn Foundation hosted it. We are seeing advances in prostate, and we know that what goes on with prostate will obviously jump over neuroendocrine because of the patient numbers. But, hopefully, it improves neuroendocrine as well.

Senator GRIFF: You actually stated in relation to changing public policy:

A potential solution for research into rare/low survival cancers is that public policy needs changing so that it becomes mandatory that any patient diagnosed with a rare or low survival cancer must have the opportunity to be involved and aware of research from the outset and this is the responsibility of the doctor.

It is the responsibility of the doctor to ensure that this takes place; how would you imagine bringing this about?

Ms Leyde n : It is a difficult one, but if it is incentivised—

Senator GRIFF: How would you incentivise that?

Ms Leyde n : It could even be through personal development—maybe funding for travel to conferences. Where a lot of clinicians now rely on pharmaceutical support to do that, maybe it should be a government set-up where they say, 'We will actually help to fund this.' It is an investment into researchers and fellows who are actually doing this—incentivising more people into this area. That could be one way.

But to mandate it: we have seen in some places in Europe that clinical trials actually have to have some proportion of rare as part of the protocol—especially around immunotherapies; they actually have to involve some sort of breakdown to let these patients into the larger clinical trials. So mandating it could become a Medicare thing—and I do not really know Medicare too well: they could get incentives through putting a proportion of patients onto a trial. It actually encourages them to know about it. What we see is that even oncologists involved in these societies or who are members of societies such as COSA and AGITG still do not know about these trials. How do we enforce that a bit more? Maybe everyone gets affected if things are taken away from them, but they could be incentivised through something like Medicare.

Senator BUSHBY: You mentioned earlier on that you were seed funding a clinical trial. I presume from the fact that it is only seed funded that other funding is coming from elsewhere. If you seed fund a trial, where does the rest of the funding come from?

Ms Leyde n : We seed funded the NABNEC trial, for instance, until they could get it up and running. Then they went to the NHMRC and they did get funding for that. We seed-funded CONTROL NETs, then through our networks we were able to get some money through Perpetual, which was fantastic because they obviously saw the merit in that. But they are still running just on our money and, say, $90,000 from them as well. So the seed funding comes from our fundraisers and comes from our patients. Our patients are putting money in there.

I think you also mentioned the genomics in what you were talking about before, and we are so excited that something like that is actually happened, even in our little pancreatic nets. But how do we then translate all this incredible research that is being done into that? So, for our small organisation, our goal is to have a $1 million research fund by the end of the year. Our research advisory panel is made up of leading European experts, and the only reason we are doing that is that we want to fund Australian research—or, at least, to encourage principal investigators here in Australia. That is not to say that they cannot then recruit and collaborate with our global friends. I have not worked in any of the other cancer communities, but this particular community is a very collaborative and close network of clinicians and researchers. We chose to have these leading European ones so that they could assess the Australia ones and, as I said, to be impartial as well.

But we can only seed fund. What we can do and what we see as the benefit is in at least getting something started, whether it is setting up the database so that there is evidence to go back to—now, hopefully—the Medical Research Future Fund or the NHMRC to provide the evidence that this trial is actually needed as well.

Senator BUSHBY: So, basically, the seed funding is for that purpose.

Ms Leyden : Yes.

Senator BUSHBY: It is so you are able to bolster your argument or your case and improve your prospects of success, effectively, when you go to other more established forms of funding, rather than just doing it cold.

Ms Leyden : Absolutely. We see that as the smartest way we can do it for this particular patient.

Senator BUSHBY: Occasionally I ask questions that are a bit more from left field. You see a lot about crowdfunding for various things. Is that something that you have looked at for this type of thing? If you seed fund something, you could also use the same evidence to then go out and try to crowdfund research or a clinical trial.

Ms Leyden : For sure. I definitely think that that is a possibility. I see that there are other things like crowdfunding for treatments and that sort of thing.

Senator BUSHBY: Yes, I have heard a lot about that.

Ms Leyden : It is so sad that patients have to now go out and do that. If they are getting access to the drugs, that information that these people are providing on this compassionate access should actually form the start of a clinical trial, if you like, because it is providing evidence. But that evidence is actually not even put anywhere. I think crowdfunding for treatments is a model that we should not have to do. But crowdfunding for clinical trials and for greater research is definitely something that I can see in the future.

Especially, interestingly, we are looking a bit more at funding—and I know that there was a lot of talk about diet and nutrition in the previous panel. Our patients' symptoms are so dire that we would hope that pretty much as soon as they are diagnosed they would be put on vitamin supplements—which does not happen—because, for instance, the serotonin that is secreted through these particular hormones depletes their entire vitamin B. And once it is depleted it cannot come back. So we are looking at a trial that will help to fund that fight and part of this particular trial out at the Peter MacCallum Cancer Centre and the Olivia Newton-John Cancer Research Institute. But we are mall organisation. Who are the people out there in the world that have vitamins? Well, there are some big organisations like Swisse and Blackmores, and we thought that maybe we could approach people like that. It is to their advantage to legitimise their businesses, and it is to our advantage to actually get the products that they provide. So, especially with research, I hope there will be more work.

We were so grateful to Perpetual; we were so grateful to other big organisations like that. We also are one of the groups that the ASX Thomson Reuters Charity Foundation support, because they only like to support smaller charities, not the bigger ones. Through the money that they have provided along the way, we have been able to seed fund different research as well.

Senator BUSHBY: You have talked about your collaboration with EU centres of excellence and clinicians and experts. Why Europe rather than the US, which is often considered the leading country for medical research in many areas? There is another thing I am curious about. I have heard that there is an awful lot of medical research going on in China. Is there any opportunity there for collaboration and additional learning?

Ms Leyden : It is interesting. I think, with Europe, it is probably that you go where the leading clinicians are. In Europe, and especially at Uppsala University, Professor Kjell Oberg has been in this field for 40 years, and we are so excited that he sits on our advisory panel. He is the one, actually, my sister went to see. Also, I think it is because they have had access to PRRT, so they have been doing it for a long period of time. We also have gallium PET scans, which you may have heard about, and different radio nuclear medicine that is involved with actually picking up these tumours in the first place. We have had that access here, and also it has been very accessible in Europe. In America, it actually has not been that accessible, nor do they have PRRT, so a lot of those patients have been going to Sweden. I guess that is why—

Senator BUSHBY: For specific treatment reasons.

Ms Leyden : It is for specific treatment and clinicians. Having said that, America has now really upped the ante with neuroendocrine tumours, and I think we will see a lot of advancements there. It is interesting that you mentioned China. Next year we are going to host APNETS, the Asia Pacific NeuroEndocrine Tumour Society, conference here in Melbourne. We know we work personally with patient groups in Singapore and India. China is somewhere that we are looking to really try to expand on—as is Indonesia. But, obviously, there are barriers in relation to language, and, again, Europe has probably always been an easier collaborator. Going back to America, we also have CommNETS, the Commonwealth Neuroendocrine Tumour Group, which was born out of AGITG and which has Australia, New Zealand and Canada. So there is a lot of collaboration going on. But we definitely see the Asia-Pacific region being where Australia sits, and this is the region we should be working really closely with.

Senator BUSHBY: I am being wound up. I asked about China because I understand that they have made deliberate decisions to pour incredible amounts of money into research in medical areas. It remains to be seen where that all ends up. Obviously, there are language barriers in terms of understanding the research and the benefits of what they are doing there, but I am just curious about that.

Ms Leyden : We really hope that that is part of our way in the future.

Senator BUSHBY: Thank you, Chair.

CHAIR: Thank you for your time today, Ms Leyden. The committee will now suspend until 10.45 for morning tea.

Proceedings suspended from 10:33 to 10:45