JANET Worrall is waiting on a life-changing list.
The Toowoomba mother-of-four is one of about 60 Australians living with the extremely rare blood disease known as atypical hemolytic uremic syndrome, or aHUS.
The only treatment available to prevent death and vital organ damage is prohibitively expensive. It is not included for funding in the Federal Government's Life Saving Drugs Program.
Mrs Worrall, who was diagnosed with aHUS in September last year, said she was relying on the Pharmaceutical Benefits Advisory Committee to advise the Health Minister to fund the drug Soliris when it meets on March 11.
"At the moment, it's pretty good. I'm one of the lucky ones I guess," Mrs Worrall said.
"It's a genetic disease, so even if it's not flaring up as such, it's always there and it's just a matter of if and when it's going to flare up again.
"It is stressful, especially without the medication available at the moment if I do need it.
"I guess because there only about 60 people in Australia who have it, it's not on the government's mind. But for those 60 people it's life and death."
More than two-thirds of aHUS patients die, require dialysis or develop permanent kidney damage within one year of diagnosis.
Mrs Worrall's mother Sue Henderson said she was frustrated that such a vital drug was not included on the list for funding.
"Their lives are in limbo because they don't have the drug," she said.
"There's a drug that she could have, but she can't have it because it's too expensive and not on the list.
"You'd just like to say to the politicians, or the ones who are deciding, 'if this was your daughter, how would you feel? And what would you think her life was worth?'."
The aHUS Patient Support Group Australia will present parliament with a petition to fund Soliris. To sign the petition, visit www.ahus.com.au.
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