Macular Month - Dr Kathy Chapman

Speaker 1 00:28

Hello and welcome to New Horizons. I'm John Simpson. Age-related macular degeneration, or AMD as it's often referred to, is the leading cause of irreversible vision loss in Australia. It's estimated that one in seven Australians over the age of 50 has evidence of macular disease. That's around 1 .5 million people, and of course many thousands of those live with a significant vision loss. The Macular Disease Foundation Australia works to reduce the incidence and impact of macular disease and to ensure that those living with the condition have an optimal quality of life.

May is Macular Month here in Australia and in some other countries. And to celebrate that fact, I'm delighted to welcome to the program the MDFA's CEO, Dr Cathy Chapman. Cathy, can you explain what is the macular and what does macular disease actually do to impair sight?

Speaker 2 01:32

Our macula is part of our retina which is at the back of the eye and it's responsible for our central vision. So when people are affected by immacular disease they tend to lose their central vision but they can keep some of their peripheral vision out of the sight. So when you start being affected by something like age-related macular degeneration you lose the ability to recognise faces, you lose the ability to be able to read which often will be something that you might have really enjoyed. Working on the computer can become a lot more difficult and also being able to drive can be a real problem once you're losing that central vision. 

So macular disease doesn't cause people to have what we call black blindness but it can still have a really significant impact on how you live your life and the quality of life that you have. Some of the most common macular diseases is age -related macular degeneration which tends to happen as you get older, diabetic retinopathy, some inherited retinal diseases like Stager disease. So it's quite a range of eye conditions but it's where your central vision is affected.

Speaker 1 02:45

And am I right that in most cases vision loss is gradual over sometimes a fairly extended period of time?

Speaker 2 02:52

Yes, that's correct. Your vision loss can be very gradual. So when we talk about that 1 .5 million people Australians being affected by it, that's a lot of people at the very early stages. And, you know, what we want to see is that people stay at that earlier or intermediate stage rather than going to the severe end. So for some people it can progress quite quickly, but for a lot of people it can progress over a number of years.

Speaker 1 03:22

Cathy, let's then talk about the work of the organisation that you lead and perhaps you could start by talking a little bit about the direct services that you offer to support people with macular conditions.

Speaker 2 03:35

We're an organisation that was started a bit more than 20 years ago to be there to support people living with the conditions. So we see our support and care workers really at the heart of our work and that can be about helping people to find the information that they need about their condition. It might be to help them in terms of practical support and it can also be to help people in terms of emotional and psychosocial support as well. We're always, you know, hopeful that people like optometrists and ophthalmologists would refer people with macular disease earlier because we can be a really important source of information for people and also help people to navigate once they find out they've got a diagnosis of age-related macular degeneration or one of the other conditions, but also, you know, help people to live their best life with it as well.

We've got a new support service that we're running, which is really a very tailored program based on whether people are at the early, the intermediate or at the late stage where they might be on eye injections. And we tailor our advice of thinking, we don't want to hit you with all the information in the first phone call. We, you know, look at that program as a way of staying in touch with people over a 12 to 18 month period and we know things can change in that period as well.

So it's a good way of being able to stay connected, you know, receive our regular newsletters, but also be able to ask those questions as they arise as you get further into living with your particular macular condition. So in terms of our helpline, which is staffed by eye health professionals as well, that's available for people wherever they are in the country. Our support services are definitely available for people wherever they are and we can stay in contact with people by the phone, over email, also by text messages as well.
And we do actually have a lot of volunteers who work with us in all the states of Australia. And we have what we call a lot of peer support programs. So we often hear from people that they really would love to connect with somebody like me.

So we run peer support programs in most of the capital cities of Australia and we also can connect people to one -on -one peer support over the phone as well. So we do try to be a charity that keeps our overhead costs low and, you know, that's the advantage of us just being based in one city, but, you know, we do reach out across the country.

Speaker 1 06:21

Apart from your direct service provision, you also do a lot of advocacy work representing the interests of people with macular disease.

Speaker 2 06:29

Yes, our advocacy work is really important and when you're an independent organisation that's mostly funded by the community, one of the things we can do really well is help to amplify the voices of our community and let governments know whether that's at the state or federal level of what are the things that are impacting people at that system level. So for people with macular disease, one of the particular issues is the cost and affordability of having the eye injections. So macular disease foundation, you know, loves hearing from people living with the condition and understanding what are those system issues that make it very difficult for people and we really like to take the charge on those.

Speaker 1 07:15

So how's that work and in fact the planning of your service delivery informed by people with lived experience of macular disease?

Speaker 2 07:23

Well, I think as an organisation, we'd be nothing if we're not listening to our community. So there's a lot of ways that we try to get the right information to know if we're doing the right things. First and foremost, we have a community reference group. So that's a way where we have people who are from different states across the country and also have different macular conditions. So we can go to that community reference group when we've got particular questions and when we need involvement. But it's also, you know, an open door for that group to let us know what are the things we should be doing that are very important. 

But we also like to collect evidence as well. So as part of our research, we've been funding some social impact surveys and there've been surveys that we've had more than 2 ,000 people responding to those. So that's another good way that we really understand what's the social impacts of this condition on people's lives and what are the things that they think are really important for us to be addressing.

Speaker 1 08:26

Am I right that you're very active in the support of research, both in the medical and social research areas, and what is it about five million dollars that you've awarded in research grants in the last 10 years?

Speaker 2 08:40

Yes, that's right. So funding of research is another core area of the work of macular disease. So just like our support and care for people with the condition and also advocacy, we see funding research as so important. And we're the largest non-government funder of research into macular disease in Australia. So that's something that we're both very proud of, but we certainly wish that there was a lot more investment into research. So our research that we've been funding over a number of years looks at what's trying to help us understand what's the causes of macular disease and what are the best ways to detect it early and what would be the answers to future treatments as well.

And we're also very interested in that research on the social impact side and the psychosocial side. So how can we help people to live better with their condition? One of the things that we do that's different with our research is we certainly always make sure that we fund the best scientific quality research as well. So we have all our research grant applications assessed by other scientists who help us understand are they good study designs. But last year we also involved our community in helping us to understand well what were the best research grants in terms of answering questions that they thought would be highly significant and have a real impact for people living with the condition.

Oftentimes, researchers are very used to just talking to other researchers and using as much technical language and jargon as they possibly can. But this process that we went through really made them think about well what's the significance of their research? How is it going to answer real life questions? So the feedback we've received is they really think that it helped them to write much better applications. And I think it's also really opened their eyes to who is the recipients of the work that they're doing. And it's not just about answering questions for the sake of having questions, but where can we really see that translation start to happen?

Speaker 1 10:56

Kathy, I mentioned at the start of the program that this is Macula Month. Can you tell us a little bit about what the organization's got planned for the month?

Speaker 2 11:05

So every May, we focus on macular month as a way of raising awareness about the condition. So in Australia, we're really quite fortunate that over time, we've seen the awareness of age -related macular degeneration actually go up to being about 80% in the community of people aged over 50. So that's really high awareness. But we also need that to translate amongst the community for people to go and have an annual eye check, especially if you're aged over 50. So in May, we really try and get that message out and use media and interviews like this to help raise awareness of it and help raise awareness of the fact that macular disease foundation is out there as well.

This May, we're focusing on some release of some updated nutrition guidelines based on a study that we did last year. So there's a lot of good evidence out there about the importance of different parts of having a healthy eating diet that can help slow the progression down. So we'll be particularly talking about that. But we really want that to be a way of helping people and particular people listening to this program know that we're there as an organisation and available to help people who might be living with macular disease.

Speaker 1 12:25

Kathy, the eye care and vision support sector, as we might call it, is a fairly large and diverse body of organisations. How does MDFA fit in with those other organisations? And I'm thinking particularly about the sort of support you might get during Machilla Months.

Speaker 2 12:48

Yeah, so that's a really good question, John. Like there's a lot of different organizations working in the eye charity. And I think it's always really important that we remember what are our particular strengths and the areas that we should be focusing on, whereas those opportunities to be collaborating as well. So the Macular Disease Foundation, we really concentrate on Macular Diseases specifically and the health side and really helping people from how they're living with their particular condition. So very much focused on the community member.

We work very closely with the professional bodies like Ransco and Optometry Australia. And we work with a lot of the organizations, whose specific role is helping people with vision assistants. So we don't try and do their job, but we really hope to help people navigate to know what are those right services and where might you find them in particular. What we hear so often is people just don't know what's out there to help them. And I think the more groups that we've got talking about that there are things that can assist and there can be also things in terms of emotional support as well. We really wanna help raise the awareness collectively together about those sorts of services.

Speaker 1 14:15

And a reminder to our listeners that if you need to contact Blind Citizens Australia, you can phone them on 1800 033 6 0 or contact via email at bcaatbca.org.au that's BCA - at - BCA - dot - org - dot - AU. I'm John Simpson. Thanks for joining me for this week's program.

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