Cup of tea awareness campaign

Macular disease community get around political awareness campaign

On Friday 29 November 2013 South Australian resident Val Sellars and her husband Roly had a cup of tea with their local MP, Matt Williams, to explain the impact that living with age-related macular degeneration has had on her life and her family.

Val also highlighted the discriminatory nature of the National Disability Insurance Scheme (NDIS), which excludes people if they acquire a disability – such as blindness – after the age of 65.

Val’s meeting with her local member was all part of the campaign “Have a cup of tea with your new MP”, initiated by the Macular Disease Foundation Australia.

The Foundation has mapped the estimated prevalence of macular degeneration in all 150 Federal electorates across the country and Hindmarsh, the electorate in which Val lives, has the highest prevalence of macular degeneration in Australia. It is estimated that 9,871 people in Hindmarsh live with age-related macular degeneration.

Val, who has had macular degeneration for 11 years, said she was keen to share her story with her elected representative to ensure he can understand how common macular degeneration is and how it can affect so many older Australians like her. According to research, the impact of macular degeneration on quality of life is equivalent to cancer or coronary heart disease.¹

“I know first-hand the trauma this disease inflicts is enormous, for both the people living with it and their families,” said Val.

I want to raise awareness of macular degeneration within our new government to ensure they make it a priority in their agendas.

Val Sellars

Julie Heraghty, Chief Executive Officer of the Macular Disease Foundation Australia, said the Foundation mapped the prevalence of macular degeneration across Australia in an effort to better understand and communicate the enormous health challenge this disease poses in this country and the support required.

Right now those older Australians who go blind after the age of 65 years from this disease have been harshly dealt with by being excluded from the NDIS and by being forced into the aged care system which is ill equipped to cater for their needs.

More than 1 million people in Australia have some evidence of macular degeneration and in the absence of effective prevention and treatment measures, this number will increase to more than 1.7 million by 2030, creating an even greater burden on Australia’s health, disability and aged care systems.²

Mapping the landscape of macular degeneration

The results from the Foundation’s mapping data surprised Val. “I was totally unaware that my electorate has the highest prevalence of macular degeneration in Australia until the Foundation mapped the prevalence across the country. In one sense, it was a comfort – I know I’m not alone in Hindmarsh. On the other hand it was quite a shock to know so many people could be affected in my community,” she said.

Julie Heraghty said she is especially grateful to Val for taking the time to share her story. “With the ageing population and the predicted increase in macular disease over the next decade, we can’t ignore this important health condition.

“It’s time to put macular disease firmly in the minds of politicians around the country. We are calling on funding to further support the critical work of the Foundation in especially with our direct client services such as our National Helpline,” said Heraghty.

She said despite the prevalence of macular degeneration being four times that of dementia and more than half that of diabetes, the Foundation has received an average of only $163,000 per year (ex GST) in Commonwealth funding since 2005, to support the work of the Foundation.

References

1. The Global Economic Cost of Visual Impairment – Access Economics & AMDAI 2010
2. Eyes on the future – A clear outlook on age-related macular degeneration. Report by Deloitte Access Economics & Macular Degeneration Foundation, 2011.

Posted: 29 November 2013