Introduction by Croakey: Aboriginal and Torres Strait Islander people are ending up with avoidable blindness because of the high out-of-pocket costs of sight-saving treatments, according to Dr Guy Gillor, Lose (Rose) Fonua and Associate Professor Mitchell Anjou.
As well, the most common treatment for diabetic retinopathy, an intravitreal injection, is challenging to access as it involves multiple and regular treatments, predominantly in private ophthalmology clinics.
“Without a public or no-cost option, these fees mean the difference between retaining one’s vision, and losing it,” Gillor, Fonua and Anjou from the Indigenous Eye Health Unit at University of Melbourne write below, arguing for a longer-term and equitable solution.
In the absence of such a solution, the IEHU has developed a new information sheet – Diabetic Retinopathy Treatment and Cost in Private Practice – to support patients and healthcare teams in negotiating access for intravitreal injection treatment with private ophthalmology clinics.
Guy Gillor, Lose (Rose) Fonua and Mitchell Anjou write:
Diabetic retinopathy is one of the three conditions that contribute most to avoidable blindness for Aboriginal and Torres Strait Islander people.
The eye care sector has invested heavily in supporting access to screening; however, the most common treatment – intravitreal injection – is almost entirely inaccessible without significant out-of-pocket cost for patients in most of Australia.
Due to the complicated nature of intravitreal injection treatment for diabetic retinopathy, with its requirement for ongoing attendance and out-of-pocket costs (which can quickly accumulate to thousands of dollars, and which many patients can’t afford), the Indigenous Eye Health Unit (IEHU) at the University of Melbourne recently launched a new information sheet, Diabetic Retinopathy Treatment and Cost in Private Practice.
History of focus on screening
For over 30 years, diabetic retinopathy has been consistently identified as one of the conditions that contributes most to avoidable vision loss and blindness and for Aboriginal and Torres Strait Islander people, including in the National Indigenous Eye Health Survey (2008) and the National Eye Health Survey (2016).
In 1989, the National Aboriginal Health Strategy identified diabetic retinopathy as the next great challenge for eye health of First Nations Australians following the receding rates of trachoma.
The report recommended increased focus of screening for diabetic retinopathy in primary care, specifically through Aboriginal Health Services, including relevant training for Aboriginal Health Workers.
Strategies to reduce rates of diabetic retinopathy for First Nations Australians have primarily focused on integration of screening in primary care.
This includes an eye check as a mandatory component of the Medicare Benefits Scheme 715 health assessment, the development of health promotion resources (Check Today, See Tomorrow), provision of eye health equipment and training (PEHET) program, a Commonwealth funded program to roll out retinal cameras and other eye screening equipment to Aboriginal Community Controlled Health Services (ACCHS), together with an introduction of an MBS item for diabetic retinopathy screening in primary care that includes a specific item for First Nations patients claimable every year, as per NHMRC recommendation.
There are still many challenges in the integration of screening in primary care, including attraction and retention of staff, ongoing training, and MBS requirement of GP oversight. But the decades of investment in screening mean that most ACCHS in Australia now have a retinal camera which is required for screening.
Shifting treatment modalities
But what happens when a patient requires ophthalmology referral for treatment following diabetic retinopathy screening?
While the sector focused its efforts on improving access to screening, treatment patterns have shifted. This includes both a shift of treatment approach itself, and a shift in availability of treatment through the public system.
Until the early 2000s, the main treatment modality for diabetic retinopathy has been laser photocoagulation treatment (or ‘laser’ in short), using a laser to ablate damaged blood vessels in the eye. This treatment is routinely done in public hospitals as well as in private clinics.
While photocoagulation laser treatment continues to be used for diabetic retinopathy and other conditions, in more recent years, the use of intravitreal injections of anti-vascular endothelial growth factor therapy (anti-VEGF) has become the main modality of treatment for a number of eye conditions, including diabetic retinopathy and macular degeneration.
These injections are usually given in regular intervals, commonly every six to eight weeks, and it is not usually possible to estimate duration of treatment. In some cases ongoing treatment may be required for years.
The use of intravitreal injections exploded over this period through the private sector. After its associated MBS item 42738 was introduced in 2012, it recorded over 240,000 claims in the first full year of availability alone. A decade later, in 2021/22, the item was claimed over 600,000 times.
MBS rebate for retinal laser photocoagulation (MBS 42809) was reduced from a peak of over 45,000 claims in 2009/10 to less than 30,000 claims in 2021/22.
Unfortunately, there is no available data on access to diabetic retinopathy treatment in public hospitals, laser or injections.
However, from our experience of supporting collaborative eyecare across all Australian jurisdictions, we know of a number of isolated public hospitals, but only South Australia, where intravitreal injections are routinely carried out through the public system.
Cost of treatment
Given the lack of access to intravitreal injections in public hospitals, understanding the cost of treatment in private settings becomes particularly important.
Currently, the median out-of-pocket cost for intravitreal injection in Australia is $219 per injection, per eye. Treatment costs vary greatly between jurisdictions, starting with a median cost of $75 per injection in Tasmania, and up to $339 per injection in ACT. Costs are extracted from Medical Cost Finder portal.
Even following the median rate in Tasmania, this can translate to $600 per eye, per year, and poses a significant barrier for many. The ACT rate, for six-week intervals, translates to over $2,700 per year, per eye. These are only median costs, and in some regions, cost per injections can rise dramatically.
Without a public or no-cost option, these fees mean the difference between retaining one’s vision, and losing it.
To prepare the new Diabetic Retinopathy Treatment and Cost in Private Practice Information Sheet, we consulted with a number of ophthalmologists working in different locations to understand the common out-of-pocket costs for patients, even when all elements that can be are bulk-billed.
The outcomes show a range of $546-$723 per eye, per year. While less than the median out-of-pocket across Australia ($219 on a six-weeks course adds to $1,752 per eye, per year), this cost still represents an insurmountable barrier for many patients.
One of the main causes of this high cost is the use of Optical Coherence Tomography (OCT) scans. OCT scan is often done with each injection, however current MBS rebate only allows to claim it once per year. This means that most ophthalmologists charge an unregulated fee for each scan, and these fees can differ significantly from one practice to another.
It also means that most intravitreal injections would carry an out-of-pocket charge even when all elements that can be bulk-billed, are bulk-billed. As mentioned, these costs can potentially amount to over $700 per year per eye at the lowest side of the cost scale, when MBS rebates are bulk-billed.
Information sheet for private practice
The IEHU information sheet is aimed to support patients, carers, health workers, and Integrated Team Care (ITC) coordinators, who need to negotiate access for intravitreal injection treatment with private ophthalmology clinics.
The resource includes succinct explanation of key aspects in diabetic retinopathy treatment and breaks down common costs for patients in differing scenarios. Costs quoted in the information sheet represent expected out-of-pocket costs for all elements that can’t be bulk-billed, and for intravitreal injections, the largest portion of the cost is for OCT scans.
As the information sheet makes clear, however, best-practice for ophthalmologists is to absorb these costs to enable no-cost treatment for First Nations patients to support better equity in access to treatment.
The information sheet therefore is itself a testament to the unacceptable lack of access to no-cost treatment for diabetic retinopathy, one of the three conditions that most contribute to avoidable vision loss and blindness for First Nations Australians.
Australia has a goal of ending avoidable vision loss and blindness for First Nations People by 2025. If we are serious about meeting this goal, a long-term solution must be sought to enable no-cost access to this critical sight-saving treatment.
To access the new Diabetic Retinopathy Treatment and Cost in Private Practice information sheet, please click here.
About the authors
Dr Guy Gillor is Senior Research Fellow at Indigenous Eye Health Unit; Lose (Rose) Fonua is a Wiradjuri woman and Academic Specialist in Policy and Practice; and Associate Professor Mitchell Anjou is the director of IEHU at University of Melbourne.
Read more about the Indigenous Eye Health Unit here:
Minum Barreng: The Story of the Indigenous Eye Health Unit by Tess Ryan, Tim Senior and Linda Doherty (editor)
Our Vision in Our Hands: eye health conference highlights shift to First Nations leadership by Shaun Tatipata, Anne-Marie Banfield and Guy Gillor
See Croakey’s archive of articles on the social determinants of health.
