FIFTEEN years ago Russell Stedman had just 12 months to live when he was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1).
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The hereditary disease results in serious lung and liver disease and can hit at any age.
Mr Stedman, was in Ballarat yesterday. He is travelling around the state to raise awareness of the little-known disease in the lead-up to a meeting in Canberra next week with the chief adviser to federal health minister Greg Hunt.
He is campaigning for life-saving treatment to Alpha 1 to be made available in Australia.
“Alpha-1 is a hereditary disease that is rarely diagnosed because it presents as chronic obstructive pulmonary disease (COPD) emphysema, chronic asthma and liver disease and that is where the diagnosis stops,” Mr Stedman said. “But if diagnosed, treatment can stop progression of the disease and it as simple as a weekly top-up of the missing Alpha-1 Anitrypsin which has been available in other countries for 30 years but not in Australia.
“I have been asking the Government to fund this treatments for over two years now.”
Mr Stedman said conservatively there were 4000 people undiagnosed living with the disease in Australia. “An internal government review that has recently come through has said there’s about 5500 potential cases.”
Mr Stedman, 60, said he lived a normal life up until he turned 40.
“All of a sudden things started to catch up with me, nobody knew what was wrong and eventually I was diagnosed in 2003 as I was going down hill very fast,” he said.
“I wouldn’t have lived for another 12 months. Now I’m fully aware of this and I’m trying to get the word out there.”
“The Commonwealth doesn’t look to provide treatment anymore, companies have to make an application and so the public is held at the mercy of commercial interests. We’ve got companies who have made applications and it’s in the process of being looked at, but this approval could take another two years.”
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