Focusing on eye research - Prof. Lauren Ayton

Program theme song 0:00

New Horizons... It's up to you and me to shine a guiding light and lead the way... United by our cause, we have power to pursue what we believe... We'll achieve the realisation of our dreams...

John Simpson 0:29

Hello and welcome to New Horizons. I'm John Simpson. I was delighted to read when the 2025 Australia Day Honours were announced recently, that one of the recipients of membership in the Order of Australia, or an AM, as we know it, is Professor Lauren Ayton. Lauren is involved with research at both the University of Melbourne and holds a position with the Centre for Eye Research Australia. Hi Lauren, congratulations - and welcome to New Horizons.

Lauren Ayton 0:59

Thank you so much, John. It's an absolute pleasure to be joining you today.

John Simpson 1:03

Lauren, we might step back in time a little bit, because many of our listeners will remember your involvement with the Bionic Eye project. And in fact, I think you spoke at... was it one or two Blind Citizens Australia conventions? And as I recall, that your involvement was very much about that linking of people who could potentially benefit from the research into the trials and so forth. Can you just reflect on that a little bit?

Lauren Ayton 1:31

Yeah, we actually, I had a very scary moment the other day where I realised it was over 15 years ago that I started working on that project. And you're right, I had the fantastic opportunity to speak at a couple of BCA events on the project, so my role was as the clinical team leader. So it was really my job to help find people that might have been eligible for the bionic eye device itself. And we've had seven people implanted with the device in Melbourne now, which is very exciting. 

And then as part of that, we did a whole lot of other research around the edges, looking at, you know, what happens to the eye with retinitis pigmentosa, and you know what that means for somebody's day to day life as well? So that's quite nice now to be able to continue seeing some of the people that I first met back 15 years ago.

John Simpson 2:23

And of course, much of your work since has been underpinned by that linking of the community with the work of the researchers, hasn't it?

Lauren Ayton 2:33

Yeah, absolutely. And I think that's something that my whole research team is really proud of, that we're just really closely linked in with a lot of the people that have these conditions, and a lot of the support groups and advocacy groups. And very much our research is driven by what the needs are for people that have these conditions. So we do a lot of surveys, we do focus groups and things like that as well, just trying to work out what people actually would like us to research, and then obviously trying to follow through with that. 

And we actually, just recently, were part of a big national study that was run through a Professor and... [? Cordero] Gonzalez in Sydney, and that was actually looking at a national survey of what people thought we should be researching. So it's it definitely helps drive us when we know that the research we're doing is is important to people.

John Simpson 3:26

And as if your professional obligations don't keep you busy enough, you have a number of community involvements. So I think it's includes Usher Kids Australia, and is it the board or the medical board for Retina Australia? You're involved with both of those?

Lauren Ayton 3:43

Yeah, I am. So yes, I'm a board director for Usher Kids, and then I'm on the Scientific Advisory Committee for Retina Australia. And again, just really amazing opportunities for me, though, to be honest, just in terms of being able to communicate the research that we're doing and getting it out to the community. I'm sure a lot of your listeners are aware there's a lot of misinformation on the internet, and there's often a lot of hype about some of the treatments that are coming through for some of these eye diseases, and so it is a really great opportunity to sort of have that direct connection, to be able to tell our story and some of the things that we're discovering in our labs at the moment.

John Simpson 4:24

So let's turn then, to your current involvements, and we'll take these in the two parts, although I know that they're linked your position with Melbourne University that also relates to retinal research and inherited retinal disease.

Lauren Ayton 4:40

Yeah. So we're a funny group, so I always kind of joke that, you know, all of my team have several hats, so we so we've got research team at the University of Melbourne, which is in the Department of Optometry and Vision Sciences, and then I also have an appointment in Department of Surgery, which is in Ophthalmology, and then a co-option at the Centre for Eye Research Australia. So our research team basically work across all of the different groups, and so we're physically located in two different buildings as well, but all working on inherited retinal diseases and how we make life easier for people that have these conditions, and also hoping to come up with some treatments as well.

John Simpson 5:23

And your work with the Centre for Eye Research Australia goes beyond that in terms of leading a Pacific Research Unit, doesn't it?

Lauren Ayton 5:31

Yes, I'm very lucky at CERA to be co leading the retinal gene therapy unit with Dr Tom Edwards, who many of your listeners might know - he's a fantastic [?vitreoretin] specialist, or an ophthalmologist, in Melbourne. And the way that Tom and I work is, he is obviously the doctor in charge of doing a lot of the clinical trials that we do. So he does the surgeries, for example, if we were doing a gene therapy trial, and then myself and my team are then really responsible for the clinical trial aspect. So how do we measure to see whether the treatment has helped someone, and then also doing research into a better understanding of what the conditions look like if we don't intervene? 

So we call that our Venture Natural History Registry. And then from the Venture Registry, we also can get people involved in our clinical trials as well.

John Simpson 6:27

The term inherited retinal disease has sort of been used much more in recent years. What sort of conditions using more traditional names does that cover?

Lauren Ayton 6:40

Yeah, absolutely. It's a funny space, isn't it? The terminology has changed so much over the years. So when we're talking about inherited retinal diseases, we're talking about eye diseases that are caused, usually, by a mutation in one single gene. And so some of the common names that people will have heard of are things like retinitis pigmentosa, Usher Syndrome, Stargard disease, Coronavirus. So lot of these conditions that have had different names in the past just sort of fall underneath the umbrella of inherited retinal diseases. 

One of the interesting things is, conditions like macular degeneration also have a genetic link as well. And that's why there's much more common in a family - if someone else in your family is affected, but they're more complex, so there's multiple genes that are involved, whereas the inherited retinal diseases tend to be a little bit more simple in terms of the genetics.

John Simpson 7:39

And this may be the question of very much a lay person, but is there something in particular that's driven this focus in more recent years?

Lauren Ayton 7:48

Definitely, it's because of the emergent treatment. So again, many of your listeners will have had the experience of going to see their eye doctor and being told there's nothing that can be done. And until really recently, that was true. So till 2017 we didn't have any treatments for retinitis pigmentosa. And there's now a one gene therapy that's approved, and it's a drug called [?Luxturna], and that was approved in the US in 2017. And in Australia in 2020, challenge is it's only for a very small number of people that have a particular gene mutation that's causing their RP. But that approval and the fact that that treatment was successful really has opened up the floodgates. 

So we now have other gene therapies being developed. There's people working on stem cells, there's people working on different types of drugs as well. And so that has obviously meant that there's little bit more funding, still not enough funding, but a little bit more funding available for these conditions. And hence, you know, I think the research space has got bigger over the last decade.

John Simpson 8:58

So where does the funding actually come from for this sort of research?

Lauren Ayton 9:02

Yeah, it's a really interesting and challenging question. So historically, a lot of medical research in Australia was funded by the government. Unfortunately, the budget for medical research hasn't really gone up at all over the years, but obviously our costs have drastically and so the success rates for a government grant are now very low. So some of the schemes that we apply for, it's less than 10% of the applications actually get funded. And so what that means is, then number one, researchers spend more and more time writing grants rather than doing the research, which is not a good outcome. 

And we also need to look at other avenues as well. So we tend to look quite highly into philanthropy and people that are, you know, generously donating money towards this sort of work and also partnering with industry. So sometimes we will, you know, work with industry partners who are interested in this. Specific research question and sort of help to try and get some funding through those partnerships too.

John Simpson 10:07

And of course, that in itself, puts you into an area where there's more negotiation and considerations because of potential conflicts of interest and so forth.

Lauren Ayton 10:17

Yeah, absolutely. And it's actually funny, John, I've got another role as the Associate Dean of Innovation and Enterprise for the Medical Faculty at Melbourne University. And so this is, you know, very much, something that I'm exposed to every day. And and it is a challenging space, because, you know, with especially with treatments, we need to work with industry. So pharma companies are the ones that will take them through. But you're right. It's also about, you know, making sure we negotiate that the the, what we call the intellectual property, or the ideas that are generated at the university, we want them to benefit Australia and Australians. So it's always that sort of negotiating back and forth.

John Simpson 10:57

So where does this research lead to? What's... the vision, if you'll excuse the pun, in the same middle distance?

Lauren Ayton 11:07

Yeah, absolutely. So we expect that there will be more treatments available for inherited retinal diseases in the next few years. So there's a couple that are getting very close to that stage where actually awaiting some final data on on one of the trials for a form of retinitis pigmentosa, which will be released this year. So we're kind of getting close to having more options available. And I think the other really exciting thing for me is these new technologies that are coming up. So the drug that has been approved, Luxsterna I mentioned, is only suitable for a very small number of people. We're talking tens of people within Australia, you know, not hundreds and 1000s. 

And so the new technologies that are being developed by some of my incredibly smart colleagues at CIRA and the University and other places are non-specific to the gene, so they can use technologies like gene editing or other types of molecules or pharmaceuticals to treat people with all different causes of an inherited retinal disease. So that's what I'm really excited about, you know - what will that open up in terms of treatment options?

John Simpson 12:18

So talking about excitement leads me to the inevitable question, you... you're a person I know, personally and through your work, has a passion for what you do. What drives you?

Lauren Ayton 12:30

Ahh... look, to be honest, I'm just so blessed to be working in this space. I am. I had a lovely moment the other day, my four-year-old was talking to her friend about, you know, what their mums do for jobs. And my four year old said, Mum's on the computer a lot. Don't really know what she does, but she really loves it. That was really cute, because I do so, yeah, very, very lucky that we are working in this space. I think what drives me is the fact that we are making such big advances. 

And one of the challenging things I know for people with these conditions and their families is, it feels so slow when you're waiting for a treatment to be developed. It feels like the scientists have been saying forever. You know, we think that five to ten years, and to be fair, we kind of have, but you know, we really are in a space now where there's a lot coming down the pipeline, which looks very promising, and we're getting more and more interest from the general community about how we can help people, even if they're not getting a treatment per se. But can we help with things like better low vision aids and better signage around our public buildings and those sorts of things, which we're also very passionate about.

John Simpson 13:39

Well, Lauren, congratulations on your honour, truly, well deserved, I know from my personal interaction with you, as well as what is in the public domain. So congratulations and thank you for joining us on New Horizons. We look forward to hearing more about your work, and more broadly about our research in future programs.

Lauren Ayton 14:01

Thank you so much for having me, John. It was great to chat.

John Simpson 14:05

And finally, that reminder that if you want to contact Blind Citizens Australia, don't forget the phone number - one, eight hundred, zero, double three, double six, oh... 1800 033 660... or email, bca@bca.org.au ... Until we speak again, this is John Simpson for New Horizons.

Program theme song 14:28

We'll achieve the realisation of our dreams...