Thirty years on, Glaucoma Australia continues to make a significant impact on the lives of people at risk and diagnosed with glaucoma by delivering relevant communication and education, and funding valuable research.
March 2018 marks the 30th anniversary of the incorporation of Glaucoma Australia Inc. as the Peak Glaucoma Patient Organisation in Australia. The Glaucoma Association of Australia Inc. (as it was originally known), was started in 1986 by a group of volunteers who were keen to help people with glaucoma. Within two years the legal framework had been put in place recognising the organisation as a charity and work began to make a difference to the lives of those diagnosed by raising awareness of this potentially blinding disease in the Australian community.
The first Steering committee included Professor (then Dr.) Ivan Goldberg AM and one of his patients, Kathleen Holmes OAM, who ‘donated’ her lounge room for many years to the large group of volunteers who came to help out.
While the first paid staff member had been employed by the end of 1995, the vast majority of work continued to be undertaken by volunteers, some of whom continue to provide their services, free of charge, today. In those early days, the Association gained traction with an interview on Ray Martin’s ‘Midday Show’, a Dargie Family Benefit Concert and Margaret Whitlam, who accepted the role as the Association’s first Patron.
Although the marketing language and the communication channels have changed, the overall reason for Glaucoma Australia coming into existence still remains
With no lay organisation concentrating on glaucoma in 1988, the Glaucoma Association of Australia aimed to:
- Increase community awareness of glaucoma as a potentially blinding eye disease and stress the importance of regular eye tests;
- Provide information and support for glaucoma patients and their families, reinforcing advice and explanations given by eye care practitioners and improving adherence to therapy;
- Raise funds for Australian glaucoma research;
- Support eye and other health providers to maximise patient health outcomes, and;
- Advocate on behalf of the glaucoma community.
Although the marketing language and the communication channels have changed, the overall reason for Glaucoma Australia coming into existence still remains: to eliminate glaucoma blindness; in whatever form it takes.
The Association Today
Today, Glaucoma Australia employs five staff and has over 50 people working in a volunteer capacity to support glaucoma detection, treatment adherence and to help people live a better life while affected by the disease. The fact that there has only been four Presidents and three Executive Officers in its thirty year history is testament to the longevity of interest in improving the ‘lot’ of people with glaucoma… or maybe it signifies how much there is still to do? After all, it is estimated that only 50 per cent of people with the disease know they have it – such is the invisible nature of glaucoma that most people do not have signs or symptoms and need to be opportunistically diagnosed, unless they have significant damage.
Not an Old Person’s Disease
Glaucoma Australia has helped the community understand what glaucoma is and to alter the perception that glaucoma, while a disease of ageing, is not an ‘old person’s’ disease. Indeed, previous research undertaken by the Association found that 17 per cent of people with glaucoma were diagnosed before they turned 45 years of age. With an estimated 300,000+ Australians living with the disease, including approximately 11,000 blind from their glaucoma and a further 27,000 with glaucomatous vision loss1 there is a long way to go before we can claim credit for realising the promise of preventing blindness and vision loss caused by glaucoma.
The Association does however, continue to disseminate glaucoma information via television, radio, newspapers, magazines and more recently, the Internet and on social media. The latter two are increasingly important as we work to involve younger people in looking after their eyesight, including undertaking a regular and comprehensive optic nerves check. Early detection, along with adequate treatment, remains the best way to improve those damning statistics.
Early Relationship Building
The website: www.glaucoma.org.au is rapidly becoming the most easily scalable way to engage our audience and to assist people to conduct an ongoing relationship with the Association. This is important as many who come to Glaucoma Australia for information don’t yet have glaucoma or, if they do, will have widely varying needs over time.
While detection is the main emphasis, staying in touch and being relevant for a person at different stages of their disease is key to supporting those with a chronic asymptomatic disease that has such a variable outcome. A patient organisation like Glaucoma Australia that stays in touch with patients can assist eye healthcare professionals to increase medication persistence/adherence and increase the likelihood of patients returning for appointments.
This is important because treatment adherence, especially with topical medications is poor, with over half of those prescribed medication stopping within one year. Loss to follow-up is a main cause of stopping treatment, which in turns increases the likelihood of progressive vision loss and eventual blindness.
A recent Glaucoma Australia initiative is now seeing our organisation included as a referral destination for patients who are diagnosed with glaucoma/possible glaucoma. When an optometrist makes a specialist referral using the Oculo referral platform, the patient can also be referred to Glaucoma Australia for information and support that amplifies what the referring practitioner is hoping to achieve for the patient. This new program truly brings glaucoma education to the patient and in a seamless way.
The Next 30 Years
A family history positive for glaucoma is an important risk factor and the Association has particularly invested in understanding what this means for the direct relatives of those with advanced glaucoma (see the TARRGET Study overview in miophthalmology page 39). After demonstrating what the burden of disease is, the important task is to do something with the data. Showing governments that cost-effective family testing programs are possible is something to occupy the Association in the years to come, along with other advocacy initiatives, such as equality of access to treatment choices and better collaborative health partnerships that benefit patient outcomes.
Glaucoma Australia will continue to offer cutting edge multi-channel patient information, help deliver clinician education and partner with other research organisations to find better/easier ways to detect glaucoma, and to treat and manage it… all the time being sensitive to the needs of people with glaucoma, their families and the professionals who manage their condition.
Here’s to the next 30 years!
Geoff Pollard resigned from his position as the National Executive Officer of Glaucoma Australia on 31 January 2018, having led the organisation for almost seven years.
1. Clear Focus – the economic impact of vision loss
in Australia in 2009. Vision 2020 Australia, 2010.