Anita McGrath needs to spend $90,000 a year on the treatment of her rare cancer.
My name is Anita McGrath, I'm 44-years-old and since January this year I've been battling a rare lung cancer and must pay $90,000 a year for the treatment that can keep me alive.
I have a loving husband and two beautiful boys, and I am one face of the 44,000 Australians diagnosed with a rare or less common cancer every year.
22,000 of us will die each year, but I'm determined not to let 2014 be 'my year'.
I was diagnosed with Non-Small Cell Lung Cancer (NSCLC), Adenocarcinoma, stage 3a, inoperable and my treatment is not listed on the PBS which means I have to pay the full price of $7,500 a month – that's $250 per day.
As my cancer is rare, my chances of survival are lower than someone diagnosed with a common cancer. This is because rare cancers are usually diagnosed later, have fewer treatment options and have reduced access to medicines.
After years of tests and x-rays, my symptoms were always put down to my underactive thyroid, being busy looking after small children and working tirelessly. On December 30, 2013 I was told there was a 4cm lump on my lung – happy New Year to me!
I never thought lung cancer would be an option for me as I have never been a smoker, I eat well and exercise daily to keep my body and mind in good working order.
After diagnosis I underwent multiple rounds chemo and radiation without significant improvement. In August it was discovered I was also 'lucky' enough for my tumour to test positive to a rare gene found only in 3-7% of lung cancers. This was good and bad news – it meant there was a targeted treatment available, but that treatment was going to cost a not-so- small fortune.
The Pharmaceutical Benefits Advisory Council (PBAC) has denied both applications to list this drug on the PBS which means I have to pay $7,500 each month to stay alive, or $90,000 a year.
I'm lucky enough to have loved ones who are able to help me afford this drug, but I can't rely on their generosity forever. They have families too.
This month, as part of Rare Cancers Australia Sick or Treat initiative, I'm sharing my story to raise awareness of rare cancers and the lack of access we have to life saving treatments.

Today Rare Cancers Australia is launching the Cancer Medicines Fund to help the thousands of Australians, like me, access life saving and life extending treatments that are financially out of reach.
This initiative will allow me access to treatment that will see me live many more years than expected so that I can watch my two beautiful boys grow into handsome young men.
For more information please visit www.sickortreat.org.au