Deborah Shaw has dialysis for nine hours, every second night to manage the effects of an ultra rare blood disease. Photo Mike Richards / The Observer
Deborah Shaw has dialysis for nine hours, every second night to manage the effects of an ultra rare blood disease. Photo Mike Richards / The Observer Mike Richards GLA170214RARE

Medication denied to mother on dialysis

DEBORAH Shaw is dying to get her hands on Soliris, a drug that has recently been approved by the Federal Government, but she feels she has again been let down by bureaucracy.

The Gladstone mother-of-two contracted atypical hemolytic uremic syndrome (aHUS) when she was 32.

Eight years later, she is still fighting for the right to get healthy.

Mrs Shaw has been campaigning for the approval of Soliris for several years.

And while she is now happy at the success of that campaign, she remains unable to access the drug.

She fails to meet the eligibility requirements because of a kidney transplant she had to combat the disease in 2006. If eligible, she could stop undergoing dialysis, which she spends nine hours connected to every two days.

"It is a small win, but for people like me who are dialysis dependant, there is no benefit. It means nothing."

Mrs Shaw is desperate to contribute to society, to be an active wife and mother, and to say goodbye to her dialysis machine.

She has vowed to continue fighting.

"The battle is not over," she said.

"We have to keep putting pressure on people, spreading awareness and staying positive."



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