Macular Disease: Advocating for Accessible Care

Macular disease affects people of all ages, though AMD and diabetic retinopathy remain the two most common conditions in Australia affecting the macula – the central part of the retina responsible for detailed central vision.

Currently, approximately 1.5 million Australians show some evidence of AMD, representing one in seven people over the age of 50.¹ Of these, an estimated 1.3 million have early or intermediate AMD, while approximately 102,000 Australians have geographic atrophy (GA) and 173,000 have neovascular AMD (nAMD).¹

Diabetes-related eye conditions represent another significant category of macular disease. With approximately 1.3 million Australians living with diabetes, about 300,000–400,000 are affected by diabetic retinopathy – the leading cause of preventable blindness among working-age Australians.^2,3 This number continues to climb rapidly due to the significant increase in diabetes prevalence nationwide.^4,5 Among those with diabetic retinopathy, an estimated 91,000 Australians live with diabetic macular oedema (DMO), a serious complication that can cause loss of detailed central vision and blindness.⁶

Other macular diseases include retinal vein occlusions (RVO), macular telangiectasia (MacTel), retinitis pigmentosa, Stargardt disease, and Best disease.

Treatment Options and Their Effectiveness

Since their introduction in 2007, anti-vascular endothelial growth factor (anti-VEGF) medicines, delivered via intravitreal injections, have revolutionised treatment for several types of macular disease. These treatments have proven effective in slowing the progression of vision loss for conditions including nAMD, DMO, and RVO.

Currently, more than 62,000 Australians with nAMD, 18,000 with DMO, and 11,000 with RVO receive these sight-saving injections.^7,8 However, while treatment for DMO and RVO can be episodic, with disease progression potentially halted by addressing underlying causes, treatment for nAMD typically requires frequent, ongoing intervention.

Ophthalmologists need to treat nAMD every four to 16 weeks, creating a significant burden on both patients and the healthcare system. Most patients receive an average of seven injections in one eye per year, requiring regular visits to specialists who are often concentrated in major urban centres.

The first medicine to treat geographic atrophy (pegcetacoplan, brand name Syfovre, Apellis Pharmaceuticals) received approval from the Therapeutics Goods Administration in January 2025. Should this medication be listed on the Pharmaceutical Benefits Scheme (PBS), it will provide an important option for preserving the sight of eligible patients with geographic atrophy. However, it will also increase demand for intravitreal injection treatment from a healthcare system that is already stretched to capacity.

For many, the financial burden becomes unsustainable, leading them to discontinue treatment despite the risk of vision loss

Healthcare Costs and Personal Impact

The financial impact of macular disease falls heavily on both the healthcare system and individuals. Best available data from 2009 shows that the total financial cost of vision loss in Australia (excluding loss of wellbeing) was estimated at AU$7.2 billion⁹ – a figure that is long overdue for updating.

For individuals, particularly pensioners and those on fixed incomes, the costs can be prohibitive. New research conducted by MDFA, in collaboration with the School of Optometry and Vision Science at the University of New South Wales, Sydney, found that the median total cost for people living with macular disease, who receive sight-saving eye injections, amounts to 12%* ($3,621) of the annual government pension payment.

The financial strain is even greater for some patients. The study, which surveyed nearly 1,500 Australians with macular disease, revealed that for almost one in 10 Australians who receive eye injections, the cost of living with their condition exceeds $6,000 annually – around 20%* of the annual government pension payment.

These costs, which include eye specialist appointments, eye injection treatments, and vision aids, significantly reduce the funds available to pensioners for essential expenses like rent, bills, and food. For many, the financial burden becomes unsustainable, leading them to discontinue treatment despite the risk of vision loss.

People living with AMD shouldn’t be forced into a position of going blind because they can’t afford treatment that could save their sight. We are, therefore, calling on the incoming Australian Government to make the preservation of sight a national priority.**

The Challenge of Geography

Access to treatment varies dramatically across Australia, creating additional barriers for those living outside major cities. Treatment is predominantly provided by private ophthalmologists, with between 77% and 82% charging out-of-pocket fees.¹⁰ Only a few metropolitan and larger regional public hospitals provide eye injection treatment.

The geographical distribution of ophthalmologists compounds the problem. Approximately 84% of ophthalmologists are based in major cities,¹¹ leaving just 16% to service the 28% of Australians (seven million people) who live in regional, rural, and remote communities.¹²

This imbalance forces many Australians to travel long distances to access treatment. The burden of travel becomes particularly significant for older patients, who may have mobility issues and often depend on family members or community transport services to attend appointments.

A 2020 MDFA survey on treatment barriers13 found that 11% of respondents considered delaying or stopping treatment due to travel distance, with 3% actually doing so. Additionally, 13% considered discontinuing treatment due to lack of available community transport, and 16% considered stopping due to the unavailability of a carer to provide transport.¹³

Treatment Persistence: The Critical Challenge

Perhaps the most concerning statistic is the high rate of treatment discontinuation. Approximately 50% of people with nAMD discontinue treatment within five years of starting eye injections, with cost burden cited as a significant reason.⁸

This low persistence rate has profound implications. Without regular treatment, patients with nAMD face rapid deterioration of vision, leading to blindness that could have been prevented. The personal cost is immeasurable – loss of independence, reduced quality of life, social isolation, and increased risk of depression and falls.

The economic impact is equally significant. Premature vision loss increases dependence on aged care services and other support systems, creating additional costs for individuals, families, and the healthcare system.

… economic modelling suggests that government investment in more affordable and accessible treatment could, over the next decade, help 22,000 more people persist with their treatment

The Fight for Sight: MDFA Proposed Solution

In response to these challenges, in the lead up to the federal government election, MDFA proposed practical recommendations for the next government to improve access to sight-saving treatments. One key recommendation in our Federal Election Agenda is the introduction of a Neovascular AMD Treatment Incentive Program to provide financial relief for pension card holders. Under this proposal, Medicare would provide registered ophthalmologists with an additional $100 for eye injections performed on eligible nAMD patients, encouraging more bulk billing for those most financially vulnerable and at risk of discontinuing treatment due to cost.

MDFA estimates this initiative would cost the government approximately $11.1 million annually but would ultimately save $140 million each year by preventing vision loss and reducing the need for related services.

“Reasonable investment will not only help reverse this unacceptable situation, but it will also generate huge cost savings for the government,” said MDFA Patron, Ita Buttrose AC OBE. “We must make it easier for vulnerable people who need eye injections to receive them.”

The Foundation’s economic modelling suggests that government investment in more affordable and accessible treatment could, over the next decade, help 22,000 more people persist with their treatment. This intervention would prevent severe vision loss and blindness while saving the government more than $2 billion and reducing the financial impact on people with macular disease by more than $1 billion.

Experts Join Call for Change

The MDFA’s proposal has received endorsement from leading eye health organisations, including the Royal Australian and New Zealand College of Ophthalmologists (RANZCO), Optometry Australia, Orthoptics Australia, Vision 2020 Australia, and Advanced Pharmacy Australia.

Professor Mark Gillies, Professor of Retinal Therapeutics at the Save Sight Institute, University of Sydney and Head of the Medical Retina Unit at the Sydney Eye Hospital, has fully endorsed the initiative. “As director of the largest service in Australia that cares for people who need eye injections through the public health system, I can confirm that we are dangerously inundated,” he said.

He acknowledged the financial barrier that treatment costs present: “We recognise that even a few thousand dollars a year in out-of-pocket costs to save sight is a barrier for some people, particularly in these difficult economic times. The payment will cover not just the injection but also the assessment and management of the patient by the doctor.”

Prof Gillies expressed confidence in the proposed incentive programme: “This genuine incentive to provide more affordable service to patients in real economic need will certainly boost the number of Australians around the country who need ongoing eye injections, frequently for the rest of their lives, to keep their sight.”

The Hon Jillian Skinner AM, former NSW Health Minister and MDFA ambassador, who lives with AMD, emphasised that eye health should be a bipartisan concern. “Tremendous gains have been made in Australia in tackling major health issues when we have taken a bipartisan approach. I’m hopeful that all Members of Parliament, no matter their political allegiance, will support the recommendations of the Macular Disease Foundation,” she said.

Drawing from her personal experience with AMD, Ms Skinner highlighted the importance of treatment access. “I feel extremely fortunate to receive monthly sight-saving eye injections for my neovascular AMD, but sadly this is not the case for all of us in Australia living with macular disease. Eye injections ensure that I can retain my vision, maintain my independence, and keep living life to the fullest.”

If we don’t see systemic change in our current health system, this situation is only going to get worse

Additional Recommendations

Beyond the Neovascular AMD Treatment Incentive Program, MDFA proposed other measures to improve access to care:

1. Investing in public-private partnerships to increase access to affordable eye injection treatment. Examples of such arrangements include the partnership between the public Sydney Eye Hospital and the private Save Sight Institute in NSW, where patients are bulk billed for all diagnostic and treatment procedures and only pay the PBS co-payment for the anti-VEGF medicine.
2. Establishing national access to, and stronger government oversight of, public treatment of macular disease in all states and territories. This includes negotiating with all jurisdictions to develop a single unified Pharmaceutical Reform Agreement (PRA), integrated into the National Health Reform Agreement. Such an agreement would ensure that all state and territory public hospitals can access and provide PBS-funded medicines such as intravitreal injections in a nationally consistent approach.
3. Continued investment into the professional development of eye care professionals managing macular disease patients, as well as non-clinical patient support programmes such as MDFA’s new Eye Connect service.

The Way Forward

The challenges facing Australians with macular disease are significant, but not insurmountable. With targeted investment and policy reform, MDFA believes that thousands of people could retain their vision and independence while reducing long-term costs to the healthcare system.

If we don’t see systemic change in our current health system, this situation is only going to get worse as the number of those diagnosed grows.

The incoming government has the opportunity to save the sight of thousands of Australians now, and ultimately make savings into the future, by adopting our recommendations.

The full details of MDFA’s recommendations are available at mdfoundation.com.au.

Dr Kathy Chapman BSc MNutrDiet PhD GAICD  is the Chief Executive Officer of Macular Disease Foundation Australia. A respected senior leader and CEO in the for-purpose sector, her diverse executive career traverses key organisations such the Heart Foundation of Australia, Down Syndrome NSW, Cancer Council NSW, and the NSW Council of Social Services.

References

1. Deloitte Access Economics and Macular Degeneration Foundation. Eyes on the future – A clear outlook on age-related macular degeneration (2011) available at: mdfoundation.com.au/resources/eyes-on-the-future/ [accessed March 2025].
2. National Health and Medical Research Council. Guidelines for the management of diabetic retinopathy (2008) available at optometry.org.au/wp-content/uploads/Professional_support/Guidelines/nhmrc_diabetic_guidelines.pdf. [accessed March 2025].
3. Dirani M, et al. Out-of-sight – a report into diabetic eye disease in Australia. A report for Baker IDI and Centre for Eye Research Australia (2013) available at baker.edu.au/-/media/documents/impact/outofsightreport.pdf?la=en#:~:text=On%20average%20one%20in%20three,3.3%25%20had%20diabetic%20macular%20oedema [accessed March 2025].
4. Australian Bureau of Statistics. Diabetes (2022) available at abs.gov.au/statistics/health/healthconditions-and-risks/diabetes/latest-release [accessed March 2025].
5. Liu L, Tham YC. Re: Keel et al. The prevalence of diabetic retinopathy in Australian adults with self-reported diabetes: The National Eye Health Survey (Ophthalmology. 2017;124:977-984). Ophthalmology. 2018 Feb;125(2):e13-e14. doi: 10.1016/j.ophtha.2017.08.044.
6. Deloitte Access Economics and Bayer Australia. The economic impact of diabetic macular oedema in Australia (2015) available at: mdfoundation.com.au/news/economic-impact-of-diabetic-eye-disease/ [accessed March 2025]
7. Butler M, Cheaper medicines from today (media release, 1 Jan 2023). Available at: health.gov.au/ministers/the-hon-mark-butler-mp/media/cheaper-medicines-from-today?language=en/ [accessed March 2025].
8. Pharmaceutical Benefits Advisory Committee – Drug Utilisation Sub Committee (2018). Ranibizumab and aflibercept: Analysis of use for AMD, DMO, BRVO and CRVO. Available at pbs.gov.au/pbs/industry/listing/participants/public-release-docs/2018-05/ranibizumab_and_aflibercept__analysis_of_use_for_amd%2C_dmo%2C_b [accessed March 2025].
9. Deloitte Access Economics and Vision 2020 Australia Clear Focus – The economic impact of vision loss in Australia in 2009 (2010) available at vision2020australia.org.au/resources/clear-focus-the-economic-impact-of-vision-loss-in-australia-in-2009 [accessed March 2025].
10. Macular Disease Foundation Australia, Royal Australian and New Zealand College of Ophthalmologists, and PwC Australia. Impact of IVI rebate changes. (2019).
11. Australian Government Department of Health. Australia’s future health workforce – ophthalmology (2018) available at health.gov.au/resources/publications/ophthalmologyaustralias-future-health-workforce-report?language=en [accessed March 2025].
12. Australian Government Australian Institute of Health and Welfare. Rural and remote health (2024) available at aihw.gov.au/reports/australias-health/rural-and-remote-health [accessed March 2025].
13. PwC and Macular Disease Foundation Australia. Estimating the costs and associated impact of new models of care for intravitreal injections (2020).

 

* Calculation based on Services Australia information, the current total maximum fortnightly pension for a single person is:  $1,144.40. Total annual pension: $1,144.40 X 26 = $29,754.40 and $3,621/$29,754.40 = 12%)] servicesaustralia.gov.au/how-much-age-pension-you-can-get?context=22526.

** At the time of going to print, an election had been called for 3 May 2025.