Bianca Scott (pictured with her godmother Lisa Sullivan) is fighting for an expensive drug that can save her life. Photos: Facebook, Bianca’s Battle

Bianca Scott, the Australian teenager diagnosed with a rare, life-threatening disease, will be temporarily receiving subsidised life-saving medicine.

“Our beautiful Bianca has a chance to live. With a series of doses being funded we can finally sleep at night and breathe a little,” said her godmother Lisa Sullivan, who is currently visiting family and friends in Australia.

After months of lobbying and petitioning by Bianca’s family and friends, last week the Australian government agreed to subsidise some doses of Soliris: the only drug that can save the teenager. It costs €360,000 a year.

While this is good news, the battle is not over and the family will continue fighting to ensure Soliris is funded by the State for all patients with the condition.

“Bianca is still sick, she still has a fatal disease but she’s got at least half a chance while Soliris is in her body. We still need to fight for Soliris to be funded long term and have a long road ahead, but I thank God for helping our voices be heard.

With a series of doses being funded we can finally sleep at nights and breathe a little

“We couldn’t have done this alone. Thank you supporters worldwide, a special thanks to Senator Barry O’Sullivan and a big thank you to Malta,” said Ms Sullivan, who has been living here for the past decade.

Bianca Scott with her mother Tammy Hamawi.

Bianca, 18, was first diagnosed with atypical haemolytic uraemic syndrome (aHUS) as a seven-month-old, but recovered.

However, in January, 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.

Bianca received treatment, known as plasma exchange, that removed and replaced the defective proteins and was spending some nine hours a day on dialysis.

In February her mother, Tammy Hamawi, was able to fund five doses of the drug, with the help of her family and friends, and two further doses were bought using donations.

Doctors started seeing improvements. But the family cannot afford to pay €360,000 a year.

Soliris has been effective in allowing patients with similar conditions to come off dialysis.

Some Australians 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 is before the country’s Pharmaceutical Benefits Advisory Committee.

Ms Hamawi wrote on the Facebook page Bianca’s Battle: “We will keep working on the lobbying to have Soliris funded by our health system and we are being told that soon, hopefully, negotiations will conclude one way or another. Let’s hope it’s the right way.”

For details see www.facebook.com/Biancasbattle or www.biancasbattle.com.