A new campaign aims to raise awareness, advocate for policy reforms, and empower people affected by neurological conditions.
The Count Us In campaign, launched at last week’s Neurological Alliance Australia (NAA) National Summit, calls for action to address neurological diseases in Australia and features lived experience.
Comedian, screenwriter and advocate Tim Ferguson, who lives with multiple sclerosis, has lent his support and involvement to the Count Us In campaign video.
“There are millions of people, millions living in Australia with neurological conditions. We need more thought, more organisation and more energy put into this particular sector of people,” Ferguson said.
“We have to get all of our politicians, all of our decision-makers, to start talking about neurological conditions as if they are the next wave of disability advancement.”
The Count Us In campaign video highlights six pressing areas of need to be comprehensively progressed by a Taskforce for Neurological Conditions.
- Greater investment in medical research
- A stronger NDIS
- Equal access to assistive technology
- Establishment of a national neurological dataset
- An end to NDIS age discrimination
- Improved Aged Care, Health and Disability sector integration
Neurological conditions are on the rise both here and around the world. The Australian Institute of Health and Welfare (AIHW) has identified neurological conditions as one of the nation’s top five disease burdens, with an estimated annual impact of more than $100 billion on the Australian economy. Globally, a study released by The Lancet Neurology revealed that one in three people worldwide lives with a neurological condition.
But despite their prevalence as some of Australia and the world’s top disease burdens, the NAA said neurological conditions remain under-recognised and underfunded. These conditions are incurable, many are progressive and degenerative, resulting in significant disability, and very few have effective disease modifying treatments available. And, alarmingly, neurological conditions are on the rise in Australia and worldwide.
The NAA’s National Summit aimed to address these concerns by bringing together key decision-makers, representatives from political parties and, most importantly, people with the lived experience of neurological conditions.
The Summit called for the establishment of a Taskforce for Neurological Conditions to urgently address the needs of Australians with these conditions.
“Without effective strategies in place to mitigate their impact, they are a ticking time bomb on our health system and economy,” Chair of the Neurological Alliance Australia (NAA) and MS Australia Chief Executive, Rohan Greenland.
NAA Deputy Chair and Emerge Australia CEO, Anne Wilson said a Government Taskforce could address the unique challenges faced by people living with these conditions, set priorities and advance investment in research, facilitate timely diagnosis and enhance access to treatments, support and services to mitigate disease progression and future healthcare and disability care costs.
“Every Australian knows someone living with a neurological condition, and witnesses the lifelong impact on that person, together with their family, friends and carers. What we urgently need today is for all the major parties to acknowledge the impact of neurological conditions and work with the Neurological Alliance Australia to give hope and certainty to Australia’s neurological community,” Wilson said.
Greenland acknowledged the progress made in recent months with the establishment of an NDIA (National Disability Insurance Agency) Neurodegenerative Disorders and Palliative Care Working Group, which has significant representation from the NAA.
“This announcement is an important first step, with the promise our community will receive a better understanding of their conditions from within the NDIA but much urgent work remains to be done,” Greenland said.
Wilson echoed that sentiment while also highlighting the need for a national neurological data set to better provide support for people with neurological conditions together with dedicated neurological research funding.
“We know there are world-leading researchers working hard to discover better treatments and, ultimately, cures for the range of neurological conditions.
“But progress cannot be made without significant investment, which is why we are calling for a Neurological Mission within the Australian Government’s Medical Research Future Fund,” Wilson said.