May is Macula Month. To mark 2023’s awareness campaign Macular Disease Foundation Australia reveals new insights into the health and economic benefits of investing in improving macular disease treatment persistence.
At least half of patients diagnosed with late-stage neovascular age-related macular degeneration (nAMD) will stop their anti-VEGF eye injection treatment within five years – and when they stop, significant vision loss can occur as early as the next three months.
This, combined with Australia’s ageing population, means that without additional investment by governments, the significant number of people who become permanently vision impaired and blind will severely impact the nation’s health and aged care systems, carers and patients in future, the Macular Disease Foundation Australia (MDFA) warns.
It’s a bleak outlook but one the MDFA is tackling head-on. It commissioned PwC to undertake an economic modelling report on the benefits to government, individuals and carers of increasing treatment persistence for people with nAMD.
The report, Investing to Save Sight: Health and Economic Benefits of Improving Macular Disease Treatment Persistence demonstrates that modest additional government investment to improve health literacy, improve affordability especially for those most in need, and improve access to treatment can all lead to net savings of billions of dollars to taxpayers over the next decade.
“The reality is, without action, the lives of many Australians will be devastated over the next decade, due to the increasing rates of avoidable vision loss and blindness from nAMD,” the MDFA says.
“Government investment now will mean substantial rewards in the future, not least of which would be enabling so many Australians to be able to continue to see their loved ones and lead independent lives.”
Main reasons patients discontinue treatment
It is forecast that 195,706 people will be diagnosed with nAMD by 2032, rising by almost 45,000 cases from 151,157 people in 2023 – less than a decade.
“This increase will already add to the cost burden to individuals and government of treating people with nAMD. When we factor in that approximately half of these people won’t stay on treatment and potentially go blind, the cost becomes both financial and personal,” the foundation says.
According to MDFA’s report, which can be downloaded here, currently only 38% of the 156,000 Australian’s living with AMD receive anti-VEGF eye injection treatment, and treatment intervals currently range from four to 12 weeks. It describes five main reasons why people find persisting with eye injections challenging:
1. The treatment can be a heavy burden, such as feeling fearful about the nature of eye injections
2. People don’t always perceive treatment will be beneficial
3. There are costs to being treated and patients can experience significant ongoing out-of-pocket costs
4. Travel requirements of getting to doctors’ appointments, including the need for someone to drive them to the appointments, as well not always having an eye specialist close to where they live
5. People with macular disease often have challenges in managing other medical conditions.
“We have estimated that of the 446,000 people with nAMD who will start treatment over the next decade, 267,000 will discontinue their eye injections. Tragically, more than 160,000 – that is more than half of those who stop their treatment – will progress to severe vision loss or blindness in a little less than a decade,” the MDFA predicts.
That equates to almost two in three people who start treatment between 2023 and 2032 will stop treatment and develop vision loss or blindness.
Keep on keeping on
MDFA believes there are three key areas that can help patients stay on their treatment journey and reduce the health impacts of treatment discontinuation. These are:
1. Improved health literacy – providing education and support.
2. Improved affordability – removing cost barriers for those with low income.
3. Improved accessibility – making services more accessible in rural and remote locations.
“[We are talking about] pragmatic and modest improvements of between 10% and 25% of the treated population with net cost benefits to government to the tune of billions,” the organisation says.
A recent study cited in MDFA’s report found that treatment persistence increases when people with macular diseases are provided with tailored support to assist their ongoing treatment and treatment planning.
In the study, patients receiving intravitreal injection were supported with a range of measures across various channels and included welcome packs, structured telephone calls from staff health professionals, and information booklets. MDFA provides these types of services through its My Eyes program.
“[We] have analysed providing a conservative estimate of 25% of the currently treated population with tailored tools and support measures to improve their health literacy surrounding nAMD. When compared to the costs of doing nothing, there would be significant gains in treatment persistence, with 22,000 fewer people losing their sight, and cost savings to government of $2.03 billion and savings to patients of $1.06 billion over the next decade,” the foundation says.
Affordable and accessible
In Australia, approximately 62% of the population aged over 65 receive the age pension and their income is understood to be a minimum of $28,600 per year, and a maximum of $58,318 for individuals, according to MDFA’s report.
Set against this, intravitreal injection treatment is primarily provided in three outpatient settings; private ophthalmology clinic; public hospital; and bulk-billed private ophthalmology clinic.
“The out-of-pocket costs for private intravitreal injection treatment amount to approximately $1,900 per eye, per year, which makes it difficult for people who are on low incomes to commit to ongoing care. By helping a modest number of patients, this saves government hundreds of millions of dollars,” MDFA says.
“[PwC’s] economic modelling shows that eliminating out-of-pocket costs for an additional 10% of affected people leads to an additional 5,000 patients continuing to receive treatment who would otherwise stop therapy, which can save government $442 million and patients $241 million over the next decade.”
In addition to financial barriers to treatment, the MDFA, which supports macular disease patients and their carers, acknowledges the challenges in accessing treatment for people with nAMD who live in rural and remote communities.
Australian Government Department of Health and Aged Care data reveals most ophthalmologists (approximately 84%) are based in major cities; the remaining 16% service the 28% of Australians, or seven million people, who live in rural and remote communities.
“People with macular disease living in rural and remote areas face real struggles to commit to commencing intravitreal injection treatment and/or to ongoing care,” MDFA’s report states.
“Rural and remote patients requiring frequent injections – as frequently as once per month – can find this particularly challenging.”
In a separate report PwC prepared for MDFA in 2020, the corporate consultant mapped areas of unmet demand for treatment in Australia, where people living with nAMD have limited access to treatment – with travel times upwards of two hours or 100km – or no access at all.
“Our economic modelling analysed the impact of increasing treatment persistence in just 25% of the currently treated population. This was modelled on establishing treatment services in more accessible locations and reducing the travel burden where travel lengths exceed 100kms,” MDFA says.
“Increasing treatment persistence in 25% of current treatment recipients travelling long distances leads to an additional 22,000 patients continuing to receive treatment who would stop therapy, which can save government $2.11 billion and patients $1.12 billion over the next decade.”
Putting a price on saving sight
Released to mark Macula Month this May, MDFA’s report illustrates how investments to achieve modest increases in treatment persistence can have huge health and cost benefits for government and patients with nAMD.
“Supporting just 22,000 more people to stay with their treatment through improved health literacy results in net savings to government of billions. Increasing accessibility for 22,000 more people who live in rural and remote areas can yield similar health benefits and cost savings,” MDFA concludes in its report.
“And providing eye injections at no cost to just one in 10 more people on treatment can save 5,000 people from losing their sight and save government nearly $450 million dollars over the next decade.”
While MDFA concedes that increasing treatment persistence would mean additional MBS and PBS costs in the short term, it says these costs will be substantially outweighed by the net cost benefit to patients, carers and government.
“We believe you can’t put a value on the heartbreaking impact of losing your sight to age-related macular degeneration, but thanks to this report, we can put a price on saving it.”
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