Awareness pilgrimage for Russell
A Rawson man will embark on an awareness tour to raise the profile of Alpha-1 and fight for government funded treatment.
Russell Stedman was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1) in 2003 and was not expected to live past the age of 50.
“If I would have received treatment then, I still would have been able to work,” said Mr Stedman. “But I’m doing a good job in pushing the envelope.”
Now aged 59, he will commence a travelling campaign to make a difference for Australians who will inherit Alpine-1 in the future.
Mr Stedman said treatment is available but not funded by the government. At a cost of $100,000 a year, treatment is “out of reach of people” and “sufferers continue to die early”, he says.
While other countries such as Greece, Italy, France and Belgium fund the treatment, he poses the question why not Australia?
“They all afford this for their people,” he said. “Even poor countries, that don’t have the resources that Australia does, find funding.”
Mr Stedman’s campaign seeking funded treatment in Australia started two years ago. He believes we are still at least several years from it coming to fruition.
“And meanwhile people’s lives matter. If I could get treatment now, the difference it would make to me. It wouldn’t cure me, but it would help. Dignity, it’s a huge thing.”
Alpha-1 is a protein that is produced mostly in the liver. Alpha-1 Antitrypsin Deficiency is passed on from parents to their children through genes and may result in serious lung and/or liver disease at various ages in life.
Alpha-1 Association of Australia states although hard data about the prevalence of Alpha-1 in Australia doesn’t yet exist, it’s estimated that about one in every nine carry a defective gene and that Alpha-1 affects one out of 300 people.
Alarmingly, AAA also estimate that more than 90 per cent of individuals living with Alpha-1 have not been diagnosed.
Mr Stedman’s great hope is for Australia to introduce infant screening. He believes as a result, people would find out before getting sick, making treatment easier and allowing them to stay at work, support their family and contribute to society.
“The cost benefit to the community is overwhelmingly in support of providing funding. Infant screening is the same.”
Mr Stedman met with Federal Health Minister Greg Hunt in December and will travel in a motorhome featuring awareness signage to gather Alpha-1 sufferers to campaign the government.
“I can travel to little towns like Warragul with a newspaper and get the awareness; get the word out,” he said. “Because it comes down to 300 Victorians now need treatment and everyone in the community will end up knowing an affected family.”
He is unsure how long he will travel or how many towns he can visit.
“It’s easy to do Victoria, South Australia and New South Wales,” he said. “It depends on how much help, support and sponsorship I get.”
Mr Stedman aims to live until 70-years-old but without treatment his best chance may be a double lung transplant, which has its own severe risks involved.
Anyone interested in sponsoring Mr Stedman’s campaign or seeking further information, can email stedyrg@gmail.com.