Newspaper article Daily News (Warwick, Australia)

Fight for Vital Treatment

Newspaper article Daily News (Warwick, Australia)

Fight for Vital Treatment

Article excerpt

Gen Kennedy

The Chronicle

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. …

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