A month ago, Australian Bianca Scott, 17, was diagnosed with a rare, life-threatening disease that is causing her immune system to attack her organs including her kidneys, heart and brain.
The aspiring fashion designer – who dreamed of opening labels in Australia and Europe, including Malta – now has to spend nine hours a day on dialysis.
She cannot afford to pay €360,000 a year for a drug that treats the destructive condition.
Her godmother, Lisa Sullivan, who has been living in Malta for the past decade, is calling for the support of the Maltese people to help Bianca gain access to this medicine by signing a petition asking the Australian government to intervene.
Addressed to the Australian Prime Minister and Health Minister, the petition asks that the drug, Soliris, is put on the approved list of subsidised treatments.
She deserves a chance to live
“She just graduated. She was about to start her new life and career and even managed to obtain a scholarship.
“I was recently speaking to her mum and told her I’d love to help her open up a boutique in Malta with her label.
“She deserves a chance to live. People can help by signing the petition,” Ms Sullivan (née Faure), who is the best friend of Bianca’s mother Tammy Hamawi, told Times of Malta.
Bianca was first diagnosed with atypical haemolytic uraemic syndrome (aHUS) as a seven-month-old in New Zealand but recovered.
However, last month, one week after her high school social, she fell ill as the condition resurfaced with a vengeance.
It results in damage to small blood vessels in the kidney and other organs caused by a genetic abnormality affecting immune system proteins.
She is receiving treatment, known as plasma exchange, which removes and replaces the defective proteins.
But the therapy has been ineffective in halting damage to her kidneys and she requires daily dialysis treatment.
Unless Bianca manages to get hold of the drug soon, she will have to spend the rest of her life this way.
Soliris has been effective in allowing patients with similar conditions to come off dialysis.
It works by blocking the affected proteins from damaging a patient’s blood vessels.
The problem is that it costs $500,000 a year.
Some Australians have received it through a compassionate access programme run by drug firm Alexion Pharmaceuticals but it is not taking new patients.
A new application for Soliris to be subsidised through Australia’s Life Saving Drugs Programme – which funds expensive drugs for people with extremely rare illnesses – is before the country’s Pharmaceutical Benefits Advisory Committee, which is expected to make a decision in March.
Bianca’s family and friends are raising awareness and circulating a petition to lobby the government to fund this drug as part of the programme as soon as possible.
The petition can be accessed online through the Facebook page Bianca’s Battle (www.facebook.com/Biancasbattle) which details the gruelling reality of the teenager’s life.
The page urges people to e-mail alexion.australia@alxn.com asking the drug company to give Bianca Soliris under compassionate grounds.
It also urges people to send a picture of themselves calling for support to Australian Prime Minister Tony Abbott’s Twitter account @TonyAbbottMHR.