The miracle drug that has changed my life

Faye Upston before and after she was given access to Kalydeco.

Faye Upston before and after she was given access to Kalydeco.

I was 13 years old when I realised the words cystic fibrosis meant I was going to die young.

They were two little words I’d heard a few times since I was diagnosed at six months old, but somehow I had never really joined the dots until that day.

I was sick at the time, struggling with a chronic cough that I just couldn’t shake.

For the first time, I asked my mother what cystic fibrosis actually meant and I knew instantly that it was bad. She tried to evade my questioning but I was determined to know.

“Am I going to die young?” I asked her. What she said next left me shattered: “There is no cure. The average lifespan is 21.”

In that moment, a piece of me died. I will never forget how my heart beat like a drum as I realised I had just eight years to live. No child should have to face such a reality.

I decided to fight and for a long time, I was winning. In 2009 I was on top of the world – I was married to the love of my life and we had three (soon to be four) beautiful children.

Then one tiny accident changed everything. I was unpacking groceries from the boot of my car when the tailgate fell on my back, fracturing a rib.

To anyone without cystic fibrosis, this would be a fairly insignificant event but for me, it was life threatening.

Unable to do regular physiotherapy to keep my lungs clears, I rapidly developed pneumonia. Soon I was hospitalised and fighting for my life.

Then my doctors delivered a bombshell – if I didn’t receive a double lung transplant, I would be dead in two years. It was devastating news.

Several months later, I happened upon a documentary on genetic illnesses. It mentioned a new era of cystic fibrosis medications that could revolutionise the lives of sufferers.

What? I started Googling like a crazy lady and found its name – Kalydeco, the wonder drug that was changing the lives of patients around the world.

Kalydeco is gene specific. It treats people with the G551D gene, which around 4 per cent of the cystic fibrosis population have.

I went to have my genes tested immediately. The two weeks waiting for those results were some of the longest in my life.

Finally, my doctor called me on a Friday night with life-changing news: I carried the G551D gene. I cried with relief.

But the battle was not won yet – I then endured an urgent six-month battle to gain special compassionate access to Kalydeco.

After endless phone calls, letters, forms and tests I was granted access to Kalydeco in May 2012.

Within hours of taking my first tablet, my body started improving. I felt like The Incredible Hulk, morphing into this super-strong being.

Within days my appetite returned. Within a week I had gained weight and after a month my lung function started dramatically increasing.

Now, after nearly 18 months, my weight has gone from a scrawny 41kg to a healthy 56kg and my lung function has gone from 40 per cent to 66 per cent. I no longer need a transplant and my life expectancy has increased by 19 years at least.

After 32 years getting worse every day, I feel like I have been granted a death row pardon. My wildest dreams have literally come true.

I can sleep, eat, laugh, run and play. My old friends don’t recognise me. I never thought I would live to see this day.

Faye with her four boys.

Faye with her four boys.

Faye with her four boys.

But unfortunately, hundreds of other cystic fibrosis sufferers are not so lucky. In Australia, Kalydeco is not listed on the Pharmaceutical Benefits Scheme. This means it costs a massive $300,000 per year to access, putting it out of reach for almost all of the 200 Aussie families who need it.

Only people like me, who received compassionate access when they were literally on death’s door, can benefit from its miracles.

In August, the Pharmaceutical Benefits Advisory Committee deferred a decision on Kalydeco indefinitely due to its hefty price tag. If they ultimately reject it, my special access will be discontinued.

I will go back to being mere months from death while the people living in hope of being granted access will never know what it is like to truly live.

Our lives are literally in the government’s hands.

Help save my life and over 200 others. Please, please say #YesToKalydeco Australia!

For more information about Faye’s fight for Kalydeco, visit her blog CF Mudda.

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