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.
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.
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 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.
Top Comments
Perhaps this view will not be terribly popular but I'm not convinced a drug that costs this much should be funded by Government.
$500k a year for the duration of her life? Say she lives to 75, that's $28.5 million dollars to keep one person alive. I don't doubt she's a wonderful person and deserves a great life as much as any other person, but that money could be used to do so much for so many people.
Telling one person's story is emotive. Its the job of Government to take the money is gets from taxpayers and use that in the most efficient way to benefit as many as possible. A pensioner has to survive on $20k a year while one person gets nearly $30million in assistance? As cruel as it sounds, that doesn't seem equitable.
I absolutely understand what you're saying. It's a fine line to walk when a country has socialised health care.
While your comment makes a lot of sense it does seem too cruel to sacrifice a life. Even though its just one like its a life that is beautiful and loved and why do we have to put a monetary value on that. Such a weird situation though.
Because we live in a capitalist society and we put monetary values on everything.
I've worked for Federal Treasurers. Regardless of political allegiance, most people working in those roles, making decisions on what gets funded are decent people with a good heart. But there are hard decisions to be made. Every dollar you give to one person or one cause is a dollar that cant go somewhere else.
So you end up evaluating what represents the best value for money. I remember watching a show on ABC about a cancer drug added to the PBS by a previous health minister. The costs associated were huge, the success rate poor and success was defined as extending life by 3 months. In my opinion, it should not have been funded.
Sure, its cruel to say to a sick person you cant have treatment to prolong your life for 3 months. But that same money could fund an extra teacher for a year or a nurse or a million other things.
Choices need to be made, unless we're all willing to pay a lot more tax.
Found the story:
"In August Health Minister Tanya Plibersek announced that three new drugs for terminal cancer, including an immunotherapy drug for end-stage melanoma called Yervoy, will be subsidised on the Pharmaceutical Benefits Scheme (PBS) at a cost of $430 million over the next four years.
Yervoy, the most expensive of these new drugs, offers on average a 3.9 month extension on life.
One in 10 patients will get a survival benefit of four or more years, but it is not possible to predict which patients will get this lifeline.
Before it was subsidised, four injections of Yervoy cost patients $110,000."
well I guess you can put a price on living.... on life.