By MELISSA MEEHAN
A FERNTREE Gully grandmother is pleading that the government place life-saving medication on the PBS to save her grand-daughter’s life.
Jenny Scott’s 17-year-old granddaughter Bianca suffers from a very rare, life-threatening condition called Haemolytic Uraemic Syndrome or HUS, which means most of her time is spent in hospital on dialysis.
Bianca, who lives in Queensland, can’t do things other teenagers do, spending most of her time in bed.
Jenny is no stranger to the illness; her son David died of it when he was just six years old.
“Back then we didn’t know how to treat it,”Jenny said.
“But now we know a drug called Soliris could save her life and end the need for daily dialysis.
“She is my one and only grand-daughter – we need to save her.”
The snag is it costs $500,000 per year for each patient but until now it hasn’t been available in Australia at no cost to patients with HUS like Bianca.
“I hope the Australian Government can help by providing the funds for this life-saving treatment.”
She was diagnosed with the illness when she was a baby, and when five years old was told it was unlikely the disease would return, but sadly after finishing high school it came back.
Without being on the PBS, the drug will cost Bianca’s parents Tammy and Bruce up to $18,000 a week for the first month, then $24,000 a fortnight indefinitely after that.
Currently, Bianca’s treatment is invasive, and she needs to be in hospital for hours on end.
“We have different information now than we did in 1978 when David died,” she said.
“But when David had it, we weren’t told that stuff, it was too complicated.”
Bianca feels sick, lethargic daily.
She needs to measure everything that she drinks, her kidneys unable to manage the amount of water in her body.
“It’s costing twice as much keeping her in hospital, as the government would need to pay to put the medication on the PBS,” Jenny said.
“If it was on the PBS, there would be a maximum of 70 people Australia-wide on the drug.”
The Federal Government provides assistance with the cost of prescription pharmaceuticals through the Pharmaceutical Benefits Scheme (PBS) and the Life Saving Drugs Program (LSDP).
The drug company which owns Soliris has submitted an application for it to be subsidised under the PBS or LSDP for the treatment of HUS to the independent Pharmaceutical Benefits Advisory Committee (PBAC).
The next PBAC meeting is held next month.
Latrobe MP Jason Wood is working hard to lobby the drug company to give Bianca access to Soliris on compassionate grounds.
“Last week we got a phone call from Jenny saying she needed our help,” Mr Wood said.
“It’s a sad story; Jenny lost her son many years ago and now her grand-daughter is facing a similar fight.”
Mr Wood said while there was a chance the PBAC meeting could come back with some good news, Bianca’s condition could worsen before it was made.
“There are a number of life-saving drugs out there, but the pharmaceutical companies can’t go out giving it up for free,” he said.
“My approach is to talk to the pharmaceutical company, see if we can get access on compassionate grounds and then I will lobby the government too.”
