Maryvale woman Tracey Young is battling a rare blood disease called aHUS - atypical Haemolytic Uraemic Syndrome, treated by medication which costs more than $500,000 per year.
Maryvale woman Tracey Young is battling a rare blood disease called aHUS - atypical Haemolytic Uraemic Syndrome, treated by medication which costs more than $500,000 per year. Contributed

Darling Downs woman’s high price in fight for life

A MARYVALE woman fighting a very rare blood disease has finally been given access to a $500,000 a year drug, after more than two years fighting for a dose of the life-saving treatment.

Tracey Young has been battling Atypical hemolyticuremic syndrome (or aHUS) for the past four years.

The blood disease, produced within the liver, can lead to life-threatening damage to vital organs including the kidneys, heart and brain.

Ms Young has been in Greenslopes Hospital for the past two weeks after her aHUS flared up for the fourth time.

In 2014, the police officer and her mother Lee campaigned to have access to the life-saving drug Soliris through the Pharmaceutical Benefits Scheme.

The drug was once named by Forbes Magazine as the world's most expensive drug, with an estimated cost of $500,000 per year for a patient's life.

After two years of battling to have publicly-funded access to Soliris, Ms Young has been given her first dose.

In December, the Federal Government announced aHUS sufferers would be given 24 months of Soliris treatment before a clinical assessment is required.

The full cost of Ms Young's treatment is having a devastating effect on her finances, with a large portion of her medical expenses coming out of her own pocket.

Twice a week she is given a Aranesp injection, at a cost of $1500 each jab.

Another treatment, plasmapheresis, costs $1000 per bag.

Ms Young estimates she could use up to 11 bags each week.

The disease has become so serious that doctors fear her kidneys may stop working, opening up the possibility of permanent dialysis and transplants.

For Lee, watching her only daughter battle the disease has been heart-breaking.

"It's cruel watching you daughter go through that," she said.

"Every time she goes to hospital she's frightened she might not come back.

"If I could change places with her, I would."

Ms Young has launched a Go Fund Me page to help with her growing medical costs.

On the page she outlines how the disease has changed her life.

"My life as I knew it has been ripped out from beneath me," she wrote.

"All of a sudden I have a permcath (access lines) in my chest and I am having dialysis three times a week, blood transfusions, injections and also an infusion of a life-saving drug - all to try and switch off the disease and save my life.

"It's a nightmare. Life is so different and harder right now."

To support Ms Young, visit her Go Fund Me page https://www.gofundme. com/23embq8x.



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