While recent data show that around 20% of people discontinue intravitreal injections (IVI) after one year – rising to 50% after five years – 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, 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 quality of life, and independence 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.
Low vision, , provided
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. 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. 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.
“MDFA has played a critical role in not just supporting patients and their family’s following diagnosis, but also in the research realm”
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.
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.”
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.