By LACHLAN MOORHEAD
A NARRE Warren mother has joined the fight to have medication for a rare blood disease subsidised by the Federal Government, after her daughter suffered through the illness.
Holly Van De Loop, 9, was diagnosed with atypical haemolytic uraemic syndrome (aHUS) in October 2012, a life-threatening disease that can severely damage the kidneys, heart and brain, and which affects only two in one million Victorians.
A medication known as Soliris is the only treatment available for aHUS, and is currently subsidised in 30 countries, but not in Australia.Holly’s mum Linda has now joined the aHUS Patient Support Group Australia, which is currently lobbying to have the disease funded through the Life Saving Drugs Program (LSDP).
This week the Pharmaceutical Advisory Board will meet to discuss whether the Soliris treatment be funded through the LSDP.
Linda said her family’s life was turned upside down when her daughter was diagnosed with aHUS, which saw the nine-year-old taken to the intensive care unit at Monash Hospital to receive plasma exchanges and ongoing blood transfusions.
“Holly went from being an active, healthy kid who loved swimming and playing with her friends outdoors, to going in and out of hospital for eight months,” Linda said.
“The plasma exchange treatments, which lasted for four hours at a time on three occasions each week, eventually dropped to once-a-week.
“The plasma sessions left Holly exhausted and too tired to attend school.”
While Holly’s condition has now stabilised, her parents are frighteningly aware of the rate of recurrence of the disease.
“I’m worried that every time she goes to school, she’ll contract an infection which could trigger another aHUS episode,” Linda said.
“I don’t know if Holly’s body could cope with another attack and having plasma exchange again.”
In search of support for a rare disease that was hard to come by, Linda sought help and advice through online aHUS support networks, including the Australian patient support group.
Currently funded through the LSDP for another ultra-rare blood disorder, Soliris is the only clinically proven, life-saving treatment available for aHUS.
“Had Soliris been available when Holly was first diagnosed with aHUS, she would not have had to endure eight months of plasma exchange,” Linda said.
“There are no alternatives to Soliris. Letting Holly progress to end-stage renal disease is not an option for her and other Australians who require urgent access to this treatment.
“If we had access to Soliris through the LSDP, Holly would have the chance of living a healthy, active life like she once did.”
For more information, or to sign the aHUS Patient Support Group Australia petition, visit www.ahus.com.au
