Without medication, Rachelle Haikalis’ 11-year-old daughter will die. But the drugs needed to extend her life cost $300,000 a year and her family just can’t afford them. Here, Rachelle reveals the heartache of being unable to save your own child’s life.
This time last year, we were living a normal, happy life. Today, we are living a never-ending nightmare.
In August 2013, my 11-year-old daughter Ellie was diagnosed with cystic fibrosis (CF) – a chronic and incurable disease. Statistically, she will be very lucky to reach her 40th birthday.
It was a heartbreaking day made worse by the fact that Ellie’s condition wasn’t discovered at birth, like most CF sufferers. As a result, her lung function is now a pitiful 60.3 per cent, and decreasing every day.
I felt so guilty. Every single day of her childhood, I had been unknowingly putting Ellie’s life at risk – I’d let her play in sandpits, swim in lakes, roll around in the dirt … normal activities for most kids but potentially deadly for those with CF.
Growing up, Ellie suffered terrible tummy problems and breathing issues. There were endless hospital trips and incorrect diagnoses of irritable bowel syndrome and asthma.
She was constantly tired and irritable but a lot of the time, I just thought she was being whingey. Now I know she was battling a cruel and relentless disease without the treatment that would have made her life so much easier. My heart breaks for her.
Ellie was finally diagnosed after prolonged chest infection last year. I had no idea how I was supposed to tell my baby she had an incurable illness that would cut her life short but the diagnosis made her strangely happy – finally, we knew what was wrong with her.
And so we were thrust into the world of CF – a world of constant worry that hasn’t left us for a second in the year since Ellie’s diagnosis.
The doctors explained that what we knew as normal was no longer – we had a new normal. I am still struggling with this new normal, this new world. Life at times seems unbearable. Mental and emotional stress never leaves me.
Once we started treatments, Ellie felt better than she had in a long time – but after a couple of months, the reality of what we would have to do to keep her healthy sunk in. Just to stay well, Ellie must take dozens of pills and undergo hours of physiotherapy and nebuliser treatments every single day.
It’s demanding and relentless and very hard for Ellie, who just wants to be like any other child.
What makes this even more difficult for all of us is the fact that it doesn’t have to be like this. Ellie’s life could be transformed by a new wonder drug, Kalydeco.
Kalydeco is a miracle pill that is the first and only medication to treat the underlying cause of cystic fibrosis, not just the symptoms.
It has the power to change lives but it only works for about 4 per cent of the CF population, those with the G551D gene. Amazingly, Ellie is one of the lucky few, of which there are only around 200 in Australia.
Frustratingly, Kalydeco is not yet on the Pharmaceutical Benefits Scheme (PBS) meaning it costs $300,000 a year.
It’s unbelievable, isn’t it? My daughter is extremely unwell with horrifyingly low lung function and there is a drug that can save her life, but we can’t access it without shelling out an astronomical sum of money.
Explaining this to Ellie was devastating. Innocently, she replied: “Well you can just buy it then.” As a parent you want to be able to give your children anything they need but who can afford $300,000 per year?
Her health, her life all comes down to money. It’s excruciating.
In desperation, we organised a fundraiser, calling on our family, friends and local community for help but even though everyone gave generously, we quickly realised $300,000 was unachievable.
As parents of sick children, we should not have to go to such extreme measures to raise money for medication for our children. We live in Australia, not a third world country.
On 20 December 2013 Kalydeco was approved by the Pharmaceutical Benefits Advisory Committee (PBAC) to be put on the PBS, but with a huge condition – the government and the drug company, still needed to reach a suitable pricing agreement.
This negotiation could take months and months, if ever to reach. Simply, my daughter’s life is in their hands.
I swiftly contacted Vertex and Minister for Health Peter Dutton’s office. They say it takes time which is easy for them to say when it’s not their child getting sicker and sicker.
Ellie desperately needs this medication now, along with 200-plus other CF patients.
Kalydeco is routinely available in the US, UK and majority of EU countries and is having amazing, almost miraculous results, yet Australia is happy to lag behind.
Kalydeco adds an average of 18 years to the life of sufferers like Ellie. She needs Kalydeco now, we simply don’t have the time to wait, while she continues to deteriorate.
How can this drug be made available to patients in Greece when their country was going through an economic crisis and it is still not available in Australia, the lucky country?
The thought of losing Ellie at a young age is heart breaking. This was not the dream I had for my child, my family.
Ellie sent an email to Tony Abbott last year, with sadly no reply. When will Tony Abbott and Peter Dutton the Health Minister acknowledge the CF community’s desperate pleas for help?
It is terrible that Ellie has to endure what she does day in, day out because of this terrible disease, but to have to fight so hard for a medication that could save her life is horrifying. It is just wrong.
The PBAC is meeting this week to discuss Kalydeco. We have to keep the pressure on. If you would like to help our quest to gain affordable access to Kalydeco, please visit our Facebook page YesToKalydeco.
