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    47,000 Reasons: Tell my story

    We want to hear your experiences of living with macular disease - as a patient, carer, family member or friend.

    Image of older guy holding a pair of glasses and looking thoughtfully at the camera

    You have a unique story to share

    The outlook for people with wet (neovascular) age-related macular degeneration changed 15 years ago, with the introduction anti-VEGF eye injections. Yet far too many people stop treatment, permanently risking their sight.

    Our 47,000 Reasons campaign

    We know that treatment cost, distance and travel difficulties for appointments, as well as the burden of regular injections, are barriers to treatment.

    On the eve of Macula Month, both major parties committed to scrapping a recommendation to cut the Medicare rebate for eye injections by 69 per cent. Our research revealed a rebate cut of this size would lead to 47,000 Australians giving up eye injections due to cost. And if you stop treatment, you risk going blind.

    This is great news, and we thank both the Government and Opposition to listening to the concerns of the macular disease community. However, it is just a first step.

    We need politicians in the upcoming 47th Parliament to recognise the importance of policies that reduce the cost and burden of eye injections. As the national body representing the macular disease community, we have put forward several, costed proposals designed to improve this situation.

    How your story helps

    Economic modelling is one thing. Real life examples of day-to-day struggles dealing with cost and access to treatment are so powerful in getting our message across. We also want to hear examples of how access to treatment has helped you.

    Please consider telling us your story. You may not think you have much to say, but everybody’s experience is different. Your journey with macular disease – as a patient, a carer, a family member or friend – is unique. We will collate and share these stories in our correspondence with federal politicians. Selected stories will also be used on our website and communications. Please consider sending us a photograph.

    If you would prefer, you can call our National Helpline on 1800 111 709 and let us know you’d like to tell your story over the phone.

    National Helpline

    1800 111 709

    Stories from our community