AMD - like a ‘thief that comes in the night’

Members of Clear Vision Research had the opportunity to meet one of Australia’s most important advocates of vulnerable citizens in our community, Ita Buttrose AO OBE speak at the National Press Club this week. Ita Buttrose is the Patron of the Macular Disease Foundation, an important patient advocate group and funding agency for research, focusing on improving the lives for people living with maculopathies, including Age-Related Macular Degeneration.

Ita spoke from the heart, describing AMD as like a thief that comes in the night, taking peoples sight and along with it, their independence. She provided figures about the incidences of AMD (1 in 7 over the age of 50), the economic costs ($5 billion dollars annually) and the lack of treatment options for the most prevalent form of the disease, dry AMD. However, it was her personal accounts that resonated strongest with me. She discussed the effect AMD has had on members of her family including her father who lost his sight to AMD, as well as her Uncle Gerald’s different access to treatments, contrasted against the experiences of her Aunty Collen who currently has the incurable form of the disease. Finally, she discussed how without research into new treatments and diagnostics, more people with dry AMD will go blind.

While I can’t speak for everyone in the audience, Ita’s words are stirring inside me. I could not shake the one singular idea she spoke of; how do I want to be treated as I age?

If I was ever diagnosed with AMD, what options would I like to have? And what world would I like to live in if my visual world started to fade? Although I understand the intricate molecular interactions which cause AMD, I have no idea what it is like to have AMD and lose my sight. I hope I never do. However, I would like to think I would be living in a world where the health of individuals, especially those most vulnerable in our society, were at the forefront of our decisions.

However, this does not seem to be the case. Lack of sustainable investment in vision researchers and insufficient numbers of ophthalmologist has left Australia with a weakened workforce, preventing the delivery of world class care to Australians, regardless of their socio-economic situation. We need reinvigorated investment in researchers to find new treatments and diagnostics, working hand in hand with specialist clinicians, optometrists and nurses to provide world class point of care to all Australians. Further, a report by the Medicare Benefits Scheme is considering increasing the cost of treatment for the neovascular form of AMD from $1900 to $3900 on average. This change would make treatment unaffordable for many Australians, with predictions of unnecessary loss of vision in Australia to reach 47,000 within the next 5 years, and lead to an extra $164 million in direct costs to Government in primary health, mental health and early admissions into residential aged care.

You can hear Ita’s presentation from the National Press Club here: https://iview.abc.net.au/video/NC2111C014S00