A Wagga couple have taken their campaign to raise awareness of a common, but underdiagnosed, blood condition, to the heart of Australian democracy.
James and Anne Barclay were at Parliament House to share their experience with haemochromatosis, one of the most common genetic disorders in Australia.
People who inherit the condition absorb too much iron from food. This iron overloads body tissues, damages organs and can cause premature death.
According to Haemochromatosis Australia, one in 200 people are at risk and one in seven carry the condition, and it is equally likely in both sexes.
Mrs Barclay is a carrier, but her husband, who was not diagnosed until age 54, now has liver cancer as a consequence of untreated haemochromatosis.
A daily dose of an oral chemotherapy drug, which is affective in just 30 per cent of cases, is helping Mr Barclay.
The Barclays shared their story at the launch of the recently formed Parliamentary Friends Group of Haemochromatosis.
"A lot of ministers did come in to talk to us and a lot of them took the time to be tested for it themselves," Mr Barclay said.
"It was really good to be able to draw attention to haemochromatosis."
According to Haemochromatosis Australia president Dianne Prince, this condition does not have to be a burden if it is diagnosed early.
"Early diagnosis is key to managing and reducing complications. It is usually managed by a regime of therapeutic blood donations, at a Red Cross Lifeblood donor center," she said.
"This is a classic win-win situation benefiting both the individual and the community.
"However, there are people with the condition who should have been diagnosed decades earlier. This would have reduced the suffering, medical cost and even loss of life that results from iron overload."
Dr Prince is hoping the formation of the non-partisan Parliamentary Friends Group of Haemochromatosis wiill help raise politicians' awareness of the condition.
Hereditary haemochromatosis is estimated to cost Australia's health system about $280 million annually and to add further cost burdens by compounding other chronic conditions.
"Current research around the world supports the case for a national screening program to identify those at risk of developing iron overload and associated preventable chronic conditions," said Dr Prince.