A powerful voice on behalf of the macular disease community
Macular Disease Foundation Australia campaigns to improve access to, and affordability of, treatments, aids, technologies and services for Australians living with a macular disease.
There’s a summary of some of the issues we’ve campaigned on over the years. For further information on our advocacy initiatives please contact us through the National Helpline on 1800 111 709 or email us.
National Helpline1800 111 709
Proposed Medicare Benefit Schedule rebate cut for eye injections.
In 2020, the Medicare Benefits Schedule (MBS) Review Taskforce published its ophthalmology report recommending changes to Medicare rebates for intravitreal injections (eye injections). These injections are used to deliver sight-saving treatment for people with a range of macular conditions, such as wet (neovascular) age-related macular degeneration (wet AMD) and diabetic macular oedema (DMO). This is an active campaign.
For the latest, please head to our News section, filter by interest ‘Medicare Benefits Schedule review’.
Aged care and low vision aids
In March 2021, the Royal Commission into Aged Care Quality and Safety released its final report, which included recommendations to make low vision aids and technologies more accessible for older Australians.
Disability care and low vision aids
MDFA continues to advocate for a national low vision aids and technology program, so that all Australians with vision loss or blindness are able to equitably access low vision aids and technology, regardless of their age or where they live.
2016 Federal Election
In the lead up to the 2016 Federal Election, Macular Disease Foundation Australia called on all candidates and political parties to endorse the following:
1. Establish an equitable, national, federally funded low vision equipment program to ensure the affordability and accessibility of low vision aids, equipment and technologies for people with vision loss or blindness. This would include all those under 65 with vision loss who fall outside the National Disabilities Insurance Scheme (NDIS), and those diagnosed after the age of 65.
2. Support affordability of health care for the macular disease community (shifting costs onto the patient can result in poor outcomes and, at worst, failure to continue treatment, risking irreversible vision loss).
3. Fund MDFA to continue its national awareness, education and support services to promote macular disease prevention, early detection and when required, early treatment or low vision rehabilitation.
MDFA asked the macular disease community to support its campaign by sending a prepared letter to candidates voicing key election concerns.
NDIS and aged care reform
The Productivity Commission’s Disability Care and Support report in July 2011 recommended that people who acquire a disability at the age of 65 years old or over should be excluded from the National Disability Insurance Scheme (NDIS). MDFA continues to campaign for the removal of this age limit and better low vision aids and technology funding in aged care programs to support older Australians.
For more information about our work in this area, refer to our report ‘Low vision, quality of life and independence: A review of the evidence on aids and technologies’.
For more on our NDIS campaign, head to our News section – filter by interest ‘National Disability Insurance Scheme’.
Commonwealth home support
For many years, we’ve campaigned strongly for people who develop vision loss after the age of 65 to have access to affordable low vision aids, technology and support. This issue became particularly critical when access for this age group was denied through the National Disability Insurance Scheme (NDIS).
In July 2014 the Federal Government released the draft Commonwealth Home Support Program (CHSP), which recommended reforms to aged care to assist older people to live in their own homes for as long as possible. The CHSP provides basic maintenance, care, support and respite services for older people living in the community.
In response to this draft, we provided a strong submission recommending the appropriate inclusion of support for low vision aids and technology in as well as a holistic approach to assessment and support by an occupational therapist, for mobility aids, home modifications, and personal assistance.
We succeeded in securing a capped amount of $500 per financial year per older Australian to be used to purchase aids and equipment. Where a low vision provider deems it necessary, it has the discretion to increase the cap to $1,000 per client per financial year.
The CHSP was introduced on 1 July 2015. We continue to work with the government to support the implementation and delivery of the funding for clients to purchase low vision aids and technology under this scheme.
Diabetic macular oedema treatment
Supporting access to and affordability of registered treatments for macular disease is a key priority for MDFA. We advocated strongly for the accessibility of treatments for diabetic macular oedema (DMO) and retinal vein occlusion (RVO); two diseases that affect the macula and cause vision loss and blindness.
Most people with type 1 diabetes and 60 per cent of people with type 2 diabetes will develop diabetic eye disease within 20 years of diagnosis. Diabetic macular oedema is a complication in some people who develop diabetic eye disease. About one to two per cent of people over 40 are affected by retinal vein occlusion, although most cases occur in people over 60.
Anti-VEGF treatment has rapidly become the standard of care for most people with these conditions, with impressive evidence of safety and efficacy. In 2015 anti-VEGF drugs, Lucentis (ranibizumab) and Eylea (aflibercept) were listed on the Pharmaceutical Benefits Scheme for reimbursement for the treatment of DMO and RVO.
PIN only credit cards
Australia’s banks and major financial institutions announced that PIN-only authorisation credit cards would be introduced from 1 August 2014.
We conducted a survey of the banks and institutions to assess the avenues for information and support available to those with low vision requiring assistance, which revealed that few major banks and financial institutions had established processes to assist with the transition. We successfully advocated with banks and major financial institutions to have our vision impaired clients supported and accommodated.
South Australian hospital crisis
Redevelopment of the Royal Adelaide Hospital (RAH), announced in 2013, threatened to reduce the already inadequate 24 outpatient eye clinic rooms to just 11, placing further strains on already long waiting lists and unacceptable delays for injections for treatment of wet AMD.
In 2013 the Foundation began lobbying the South Australia government and SA Health to work closely with ophthalmologists at the RAH to find a quick and workable outcome, enabling patients to receive the timely treatment they so urgently required. We also advocated to address the reduction in outpatient eye treatment rooms at the new RAH site.
In September 2014 SA Health announced it would fund an additional seven eye clinics per month. MDFA continues to monitor and advocate for a sustainable long-term resolution to cater for the future needs of eye health for all South Australians.
Sight for Seniors
The Sight for Seniors campaign commenced in 2012 and was the platform for advocacy during the 2013 federal election. With the support of thousands of registered campaign supporters, the Foundation raised three key issues with all major candidates in the lead up to the election:
1. No age discrimination in the National Disability Insurance Scheme for over 65s.
2. A fair deal on aids and technology for people with low vision.
3. Increased funding to support the work of the Foundation in macular degeneration
The key drivers of this campaign were the development of dedicated Sight for Seniors website. The website showed mapping of the prevalence of macular degeneration across Australia by state and federal electorates
Our community also engaged in the “Have a cup of tea with your MP” initiative, encouraging those affected by macular degeneration to engage with their MP to discuss the challenges of living with the disease and vision loss