MDFA Celebrates 25 Years

Courtesy of Macular Disease Foundation Australia

25 years ago, the outlook for macular disease patients was bleak. A lot has changed in the past quarter century, thanks in large part to a community member and two dedicated ophthalmologists who established a dedicated, patient-centred organisation that would become Macular Disease Foundation Australia.

WRITER Dr. Kathy Chapman

Macular Disease Foundation Australia (MDFA) is celebrating a 25-year milestone. Prior to the early 2000s, macular disease was largely unrecognised in Australia. Public awareness of early warning signs was low, opportunities for timely detection were missed, and treatments were limited and largely ineffective. Many people sought help only after significant and permanent vision loss had occurred.

A community member living with macular disease recognised the urgent need for a dedicated, patient-centred organisation – one that could support individuals and carers, promote prevention through lifestyle and early detection, and engage governments to recognise macular disease as a national health priority.

In response, leading retinal specialists Dr Paul Beaumont AM and Professor Paul Mitchell AO founded the Macular Degeneration Foundation in 2001 as a not-for-profit with a clear vision: to reduce the impact of macular disease in Australia.

From the outset, the Foundation positioned itself as an independent, evidence-based source of information, education, support, and advocacy.

“When the Foundation was established 25 years ago… there were no effective treatments and limited public awareness,” Dr Beaumont recalled. “Age-related macular degeneration (AMD) was the commonest cause of blindness in Australia, yet few people had heard of it.

“As an ophthalmologist, I saw how profoundly macular disease affected people and their families. Patients needed far more than clinical care alone. Yet beyond the clinic, opportunities for education and support were scarce.”

Another early advocate for the cause was prominent media identity Ita Buttrose AC OBE, appointed Patron in 2005. She has remained a tireless advocate for the macular disease community ever since, playing a central role in raising awareness of macular disease and its impact.

“Twenty-five years is long enough to change lives – and Macular Disease Foundation Australia has done exactly that,” said Ms Buttrose.

“My father, Charles, was an avid reader and a former journalist. Newspapers connected him to the world, and he began each day immersed in words and ideas.

“As AMD gradually robbed him of his central vision, that connection faded. Eventually, he lost the ability to read, recognise faces, or follow the news – losses that were devastating in themselves, and even more so as he also lived with vascular dementia. At that time, effective treatments for neovascular AMD were not available, and his vision loss was irreversible.

“My Uncle Gerald’s story, however, tells a different and far more hopeful chapter. Diagnosed early and treated promptly, he received regular eye injections that preserved his sight. Uncle Gerald continued to live independently, write, stay active, and – most importantly – see the faces of his family. His experience demonstrates what is possible when awareness, early detection, and access to treatment come together. Sadly, Uncle Gerald died in February this year when he was 102.

“These two stories – brothers affected by the same disease – capture the profound change that has occurred in just one generation, and why the work of MDFA matters so deeply,” Ms Buttrose said.

A NATIONAL TRANSFORMATION IN AWARENESS AND EARLY DETECTION

As the first anti-VEGF treatments for neovascular AMD (nAMD) were approaching clinical use in the mid-2000s, one thing was clear: medical breakthroughs alone would not be sufficient. Without public awareness, rapid diagnosis, equitable access to treatment, and long-term adherence, the benefits of these therapies would not be realised at a population level.

One of MDFA’s most significant contributions has been transforming public awareness of macular disease. In 2007, YouGov national polling, commissioned by MDFA, revealed alarmingly low awareness: only 58% of people aged over 50 had heard of macular degeneration, just 45% understood it affected the eyes, and only 33% had knowingly had an eye test with a macula check in the previous two years.

As a result, MDFA launched sustained national awareness campaigns, including television, radio, print, community education, and its flagship Macular Degeneration Awareness Week, which would later expand to Macula Month. The results were transformative. By 2014, MDFA’s commissioned YouGov polling found that among Australians 50+:

• 89% were aware of macular degeneration,

• 82% knew it affected the eyes, and

• 86% reported having had a macula check in the previous two years.

SUPPORTING EARLY INTERVENTION AND TREATMENT OUTCOMES

Professor Mark Gillies from Save Sight Institute, University of Sydney has described VEGF inhibitors as “one of the greatest advances ever in ophthalmology”.

“Before they arrived in 2006, retina specialists spent a lot of time just filling out blindness registration forms for people with macular degeneration. Laser treatment delayed loss of vision for a few years for at most one in 10.”

Australia is now regarded as a global leader in nAMD outcomes, with studies showing superior long-term visual results compared with many other countries. This success is attributed to a uniquely collaborative model involving government, clinicians, industry, and MDFA – ensuring early detection, rapid referral, ongoing treatment adherence, and patient support.

Internationally renowned as a champion of ophthalmic research, MDFA’s co-Founder and current National Research Advisor Professor Paul Mitchell AO is Director of the Centre for Vision Research, Westmead Millennium Institute. “While there is currently no cure, the past 25 years have seen remarkable progress that has transformed outcomes for many people, and reshaped what is possible,” Prof Mitchell said.

“Advances in treatments for conditions, such as neovascular AMD, have dramatically improved vision outcomes. At the same time, breakthroughs in diagnostic imaging now allow clinicians to detect disease earlier, monitor it more precisely, and provide tailored treatments. These tools have fundamentally changed the way macular disease is managed.

“As a researcher, I’m excited by the growing momentum in scientific discovery, particularly in areas of high unmet need such as geographic atrophy. Promising therapies – including complement inhibitors, gene therapies, and stem cell approaches – are expanding the global research landscape. Emerging technologies, including artificial intelligence, are opening new possibilities, helping researchers analyse complex data, predict disease progression, and refine treatment strategies with greater accuracy than ever before,” he said.

COMPREHENSIVE SUPPORT BEYOND THE CLINIC

Over the 25 years of its existence, MDFA has supported tens of thousands of people to better understand and live more confidently with their diagnosis, including Clare James,* diagnosed with AMD in 2020.

“I was very surprised and somewhat shocked about the diagnosis, but I was fortunate to have some knowledge of what drusen are when the ophthalmologist mentioned them.

“I felt relieved by the knowledge that I was supported, and would continue to be supported, by the Foundation in my eyesight journey. This has been a great comfort to me and continues to be.”

Ms James’ experience reflects MDFA’s comprehensive national approach to providing information and support. Through its helpline, website, newsletters and extensive publications, MDFA provides non-clinical guidance on disease management, treatment pathways, lifestyle changes, low vision support, government entitlements, and emotional wellbeing.

Since 2006, it has delivered more than 1,900 face-to-face education sessions, reaching almost 90,000 Australians. Over 95% of participants rate these sessions as good or excellent, with most reporting increased understanding and intent to seek regular eye care.

MDFA also partnered with experts to conduct research that revealed significant gaps in support between clinical visits.

The Eye Connect service was designed in response – an Australia-first service for people living with any stage of AMD or diabetes related eye conditions. It offers free, tailored support based on diagnosis, treatment, vision status, and daily life impact.

While recent data show that around 20% of people discontinue intravitreal injections (IVI) after one year – rising to 50% after five years1 – 95% of Eye Connect participants on IVI treatment have maintained their recommended treatment schedule. And while the literature suggests only 56% of people with AMD recall receiving a clear diagnosis,2 81% of Eye Connect members report a better understanding of their condition.

Michael Yapp, Optometry Australia’s Optometry Advancement Advisor, said: “As a clinician, I place great value in my explanations to patients about their macular disease. It is, however, very apparent that a lot of this is not remembered by patients, despite how much time is spent in the consulting room with them.

“As a result, from my perspective, the additional information, time, and support provided to my patients by MDFA is invaluable in helping them both understand their condition and, importantly, all the important steps to manage it going forward.”

ADVOCACY FOR AFFORDABILITY, ACCESS, AND QUALITY OF LIFE

MDFA has been a persistent advocate for equitable access to affordable care, low vision services, assistive technologies, and rehabilitation, particularly for older Australians who fall outside disability support schemes. Its 2017 report Low vision, quality of life, and independence,3 provided compelling evidence that appropriate aids and rehabilitation can delay aged care entry, reduce depression, and improve independence – yet funding remains inconsistent and inadequate across Australia.

Policy and funding reforms championed by MDFA have included:

Medicare safety net caps. Advocating to prevent changes that would increase out of pocket costs for ongoing IVI, protecting patients who require frequent visits and imaging.

Drug switching flexibility. Supporting clinicians and patients in their choice of therapies to enable best practice, individualised care, and avoid administrative or financial barriers to switching when clinically indicated.

Optical coherence tomography (OCT) subsidies. Calling for and defending appropriate Medicare Benefit Schedule (MBS) support for OCT without undue cost burden.

Pharmaceutical Benefit Scheme (PBS) listing advocacy for anti-VEGF treatments. Ongoing policy engagement to secure and maintain PBS funded access to anti-VEGF therapies so that cost does not become a barrier to sight-saving treatment.

More recently, MDFA’s advocacy prompted a federal Government rethink on a change to the MBS that could have increased out-of-pocket costs for more than 12,200 people receiving sight-saving eye injections in the private system. More than 500 community members supported the MDFA’s call, and their personal stories were shared with federal Health Minister, the Hon Mark Butler, who announced in March this year that the change would not proceed.

While significant progress has been made in reducing the impact of macular disease in Australia, affordability and access remain ongoing concerns.

INVESTING IN RESEARCH

As well as supporting patients, MDFA has committed AU$6.9 million towards research projects across prevention, early detection, disease mechanisms, and emerging therapies. This investment has generated 40+ peer reviewed publications and strengthened Australia’s research capacity in macular disease.

“Funding contributed by the MDFA is one of the reasons that Australia is recognised worldwide for research excellence into macular disease,” said Prof Gillies, one of the many Australian researchers MDFA has funded since the inception of its Research Grants Program in 2011.

Researchers supported by MDFA have advanced understanding of common and rare macular conditions, including risk factors, disease mechanisms, and early indicators of progression.

A defining focus of MDFA’s research investment has been the pursuit of new treatments, especially in areas where options have been limited.

MDFA has also supported research that strengthens detection and care pathways, including advances in imaging, risk assessment, and large-scale data registries that improve clinicians’ ability to identify vision-threatening changes earlier.

MDFA also translates complex research into accessible, evidence-based information for the public and health professionals.

And beyond the laboratory and clinic, MDFA funds research that enhances access and equity, improving care for regional and remote communities, Aboriginal and Torres Strait Islander peoples, and children with inherited retinal diseases.

THE FUTURE FOR TREATMENT

MDFA-funded researchers are excited for the future treatment options.

“I believe the next game changer research outcome will be personalised approaches to management and treatment of those with AMD,” predicted Professor Erica Fletcher, an ophthalmological researcher from the University of Melbourne.

“Importantly, there will be a recognition that reducing progression is possible and that treatments need to be tailored for individual genetic risk factors.”

For Prof Gillies, one possible scenario is the replacement of VEGF inhibitors with tyrosine kinase inhibitors, “since they can block VEGF with much less frequent dosing, possibly annually”.

“Gene therapy is also likely to become a reality soon, which will lead to a vastly reduced, but not complete reduction, in the need for VEGF inhibitors. Both approaches are currently in late-phase clinical trials and are looking good. Ultimately, for atrophy, I think the cell-based therapies will eventually succeed. Actual regeneration of the retina, which already occurs in lower order species, is a genuine possibility,” he said.

For Robyn Guymer AM, Professor of Ophthalmology at the University of Melbourne and a Deputy Director of the Centre for Eye Research Australia, a major development will be early intervention for retinal diseases. “This will be particularly the case in AMD, where we will better understand the cause of disease and as such, will have developed non-invasive treatments that either prevent it or slow its progression to vision loss,” she said. “For diabetes, it will be universal screening so that treatment can be implemented before vision is threatened.”

(Further information on MDFA-funded research is available on page 30.)

CONTINUING THE FIGHT FOR SIGHT

In just one generation, Australia has moved from limited awareness and no effective treatment options to world-leading outcomes in AMD care. MDFA’s sustained leadership – across awareness, advocacy, access, support, and research – has been central to that transformation. As treatment paradigms evolve and the population ages, MDFA’s role as a trusted, evidence-based partner to clinicians and policymakers remains critical to protecting sight and quality of life. It remains committed to working shoulder-to-shoulder with clinicians, researchers, and policymakers, to further reduce the impact of macular disease in Australia.

Dr Kathy Chapman BSc MNutrDiet PhD GAICD is the Chief Executive Officer of Macular Disease Foundation Australia.

*Name changed for anonymity.

References available at mivision.com.au.