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She just turned 18. For her birthday present she just wants to stay alive.

Bianca Scott needs a $18,000 a week drug to live

She turned 18 on Monday.

Young, vivacious, and gorgeous — her life should be spread out in front of her ready and waiting.

But the gift she so desperately wants for her birthday will cost $24,000.

You see, Bianca Scott is dying. She has a rare kidney disease and the drug she needs to save her life is too expensive to afford.

Bianca is in kidney failure after being diagnosed with a genetic form of atypical Haemolytic Uraemic Syndrome (aHUS). She was diagnosed with the disease when she was just seven months old but it lay dormant until she finished high school last year.

“’I couldn’t keep any food down, I was always vomiting, I couldn’t stand up, I’d feel very dizzy, I had fevers… sadly I have chronic kidney failure now,” She told the TODAY show.

Bianca is one of only about 60 Australians estimated to have the disease – and the cost of the drug that can help her, is $18,000 a week.

$500,000 for a year’s supply.

Bianca has a rare form of aHUS

Soliris is the only known treatment for the disease and is known as the world’s most expensive drug.

Bianca and her mum initially used up all their savings to fund the drug, but her mother had to leave her job in order to care for Bianca.

A fund raising site was set up to help the family, but what her Mum says they need above all else is for the Federal Government to intervene.

Her mum, Tammy Hamawi, told The Courier Mail that things are getting desperate as they do not have the money to buy their next dose. Her 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.

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Initially her mum wanted soliris to go on the Life Saving Drugs Program.

But what complicates things now is that the LSDP is currently under review by the Federal Government.

The Daily Mail report that the drug has now been moved for consideration to the Pharmaceutical Benefits Advisory Committee (PBAC). Kirsten Bruce, a representative of the aHUS Patient Support Group Australia told The Daily Mail that the PBAC recommendation leaves many questions unanswered.

“Of particular concern is that under the proposed conditions, patients will only be eligible for the drug is they are currently experiencing a flare-up of the condition, and will only be allowed to take the drug for six months after they have recovered from the attack, even though it is recommended that sufferers remain on the drug for the duration of their lives.”

“The tragedy is there’s a drug that’s available, that works, and it sits on pharmacy shelves, the doctors want to be able to prescribe it but they can’t.”

The Federal Government are in talks to subsidise the drug.

The Courier Mail reports that 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.

But this does not seem to be coming quick enough for Bianca with her next dose due on June 19th.

She needs our help.

To donate go to this page here.

To sign her petition to have the drugs approved for the PBS go to this page here.

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