aHUS- In their words 3:36
We ask a doctor, a mother and a boy
- Herald Sun
- 29 Jan 2014
BIANCA Scott’s 18th birthday gift will be an expensive one – continued funding of the $600,000-a-year medicine she needs to treat a life-threatening blood disease.
The Gold Coast teen, who turns 18 today, has the genetic disorder atypical haemolytic uraemic syndrome, or aHUS. She has already received 11 doses of what’s been dubbed the world’s most expensive drug, Soliris, but needs another $24,000 for her next fortnightly dose, due next week.
Bianca’s mum Tammy Hamawi said they had already paid $264,000 for the medicine but were struggling to raise the next payment.
Bianca’s old high school, All Saints Anglican College, donated most of the funds for her most recent dose and an anonymous donor paid for the rest, but raising enough cash is a constant stress.
Bianca Scott needs $24,000 for her next fortnightly dose of Soliris. Picture: Adam Head
The battle to save lives 0:39
Dr Stephen Squinto talks about the struggle to get life-saving drugs in the hands of patients.
- Herald Sun
- 01 Feb 2014
“Thank God for amazing people who have supported us,’’ Ms Hamawi said yesterday of the donors who had contributed cash to pay for the treatment, which Bianca started in February.
The battle to raise money comes as the Federal Government and Alexion Pharmaceuticals, which makes the drug, are in negotiations about ground rules for subsidising Soliris for aHUS patients.
A “managed entry scheme’’ has been proposed requiring Alexion to rebate part or all of the price of Soliris, depending on how well an aHUS patient responds to treatment.
A Health Department spokeswoman yesterday said the Government was working with Alexion on the matter.
Bianca said her biggest birthday wish was good health, and that meant having access to Soliris.
“Everything else will then be OK,’’ she said.
You can help Bianca at biancasbattle.com/donate