Russell Stedman has a rare genetic disorder and wants to take the message to Canberra that more people need to know about it and more lives need to be saved.
Mr Stedman, who has family in the Shepparton area, has been suffering from Alpha-1 antitrypsin deficiency since being diagnosed in 2003.
Travelling from Gippsland, he was in Shepparton this week with his motor home covered in Alpha-1 statistics, messages and graphs to support his nationwide campaign.
Alpha-1 is a protein that protects the body from damage by its immune cells. Deficiency of this protein leaves the lungs and occasionally the liver vulnerable to injury.
Mr Stedman watched his father die from Alpha-1 at the age of 62.
Now 59, Mr Stedman was told he would not live past 50.
‘‘I was told: one, the treatment is expensive — true; two, it’s not available in Australia — true; and three, it’s clinically not proven — not true,’’ he said.
He said he intended to promote awareness of Alpha-1 to all Australians with his first political stop at Federal Health Minister Greg Hunt’s office in Hastings.
‘‘I want to cover all of Victoria, I want to cover South Australia, I want to go up through NSW, I want to go to (Prime Minister) Malcolm Turnbull’s office,’’ he said.
Campaigning for the past two years, Mr Stedman felt his pleas had fallen on deaf ears.
‘‘While people are unaware of the disease there’s no public support, there’s no publicity, it’s kept hidden,’’ he said.
‘‘Seeing people die is not pretty, knowing that there is treatment available and it’s not being funded is just frustrating; I want to prevent this pain,’’ he said.
Treatment for Alpha-1 involves taking human blood plasma and taking out the Alpha-1 protein to provide to sufferers.
‘‘It’s dehydrated, they can send it anywhere around the world in a vial; it’s mixed with injectable water, put in a drip bag and injected once a week to top your levels of Alpha-1 up to protect yourself,’’ he said.
Mr Stedman said the treatment was not a cure but it did stop the disease’s progression. ‘‘It’s keeping people away from double lung transplants, keeping them away from liver transplants, keeping them alive and living a normal life with their families,’’ he said.
For more information, follow OZ Alpha-1 Action and Awareness Page on Facebook or email Mr Stedman at email@example.com