Teen pleads for help to save her life

6 Mar
Bianca Scott’s mum Tammy helping Bianca to hold on and keep fighting.

Bianca Scott’s mum Tammy helping Bianca to hold on and keep fighting.

By Vanessa Hogan and Matilda Alder

A 17-year-old Gold Coast girl is pleading for her life by asking the Federal Government to add the prohibitively expensive drug she needs for survival to the Pharmaceutical Benefits Scheme.

Bianca Scott had just finished Year 12 when a rare blood disease she suffered as a baby resurfaced after being in remission for 16 years.

Atypical Hemolytic Uremic Syndrome (aHUS) is a life-threatening genetic disease where the vital organs are progressively damaged by a defect in the immune system.

Without Government subsidies, the drug crucial to Bianca’s survival, called soliris, costs around $20 000 per dose, which amounts to $500,000 per year to keep Bianca alive.

Bianca is leading a plea for soliris to be added to the PBS and therefore subsidised by the government for all Australians suffering from aHUS.

Soliris is already on the PBS but is linked to another disease, which prevents Bianca from accessing the subsidy.

Bianca at her high school formal.

Bianca at her high school formal.

Bianca said that the support she has received, not only from close friends and family but from strangers who have genuinely wanted to help, was incredible.

“Seeing the support and love from everyone definitely makes each day easier knowing so many people are standing behind me throughout this battle,” she said.

Best friend and Bond University student Sarushka Reddy said the more people who get involved in the plea increases the chance of the Government recognizing the need for Soliris subsidies.

“Bianca’s such an amazing girl,” she said.

“Despite everything she’s going through, she still wears a smile on her face, which shows just how strong she is.”

Bianca believes that if she was able to receive financial aid from the Government, she would be able to get her life back.

“It would mean for the first time I would be getting a real treatment that stops my disease,” she said.

“I would get the chance to live a life that is as normal as possible, return to my studies and social life, as well as fulfilling the journey of growing up independently.”

The aHUS support group Australia published on their website that aHUS “kills 10% of patients diagnosed within the first year if it is untreated.”

The Government Health department was contacted via phone and email, however no response was received before the publication of this article.

Biancasbattle.com is a website dedicated to Bianca and her goals which includes a link where donations can be made towards her Soliris doses.

The goal for donations is set at $500 000 and only $50 000 has been raised so far.

“My mum and I are extremely thankful for all the support we are getting,” said Bianca.

To support Bianca and keep updated on her story visit Bianca’s website  and Facebook page  where you can like, share and donate.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: