Saturday, 31 May 2014

Kalydeco for Australians: The Painful Protracted Process

Prepare yourself, it has been, and still is, a   L O N G   L O N G  process, so here I go.....

Since last blogging I have been very busy with the Australian * #YesToKalydeco Campaign. Can you believe it?! Over two years since G551D, CF patients in the US gained access to this life saving drug. Sadly, other than those of us on the compassionate program, Australians are still waiting?!! 'Why' you ask?... simple: Money. Kalydeco costs 300,000 US per patient per year. Currently available in the UK, EU and US, plus a deal has been tentatively struck a couple of days ago between the Canadian government and Vertex, if this eventuated it'll mean 95% of the G551D CF community worldwide have access to kalydeco... while the ink is drying in Canada, back in Australia reports from Vertex say we are their toughest customer yet and the proposed criteria of our PBAC is the most controversial ever, potentially excluding over 40% of Australian G551d  patients.

Saved My Life! 22nd of May marked Two years on Kalydeco

65 Roses Canberra Events: Many thanks to Felicia from CFV ('Cystic Fibrosis Victoria')!
On Wednesday Benjamin and I represented Victoria, together with the lovely Rachelle and Kate, we all travelled to our nations capital to meet with The Hon Peter Dutton, Health Minister of Australia. The 65 Roses events happen annually to raise awareness about the disease and to advocate for better health care for CF patients in Australia. This year, the spotlight was on Kalydeco! 

Ben and I (pictured 3rd from the left, front row) with some of the most dedicated people I know, who travelled from all around Australia to advocate for cystic fibrosis and Kalydeco.

After a restless night, my day started at 3 a.m. My mind was in overdrive, I was reviewing my dot points, trying to clarify in my own mind what was the most concise way to convey such a complex and serious issue. On the briefing given to those who were attending, one suggestion said 'tell the politicians how life with CF affects you' ... this was really thought provoking for me as I generally don't focus too much on the hardships of CF, I prefer to be proactive and get on with life, choosing not to focus on the dark side of CF much because I find it demoralising, plus it would drag everyone else around me down more than it already has. However for this purpose in order to create change, it was important to talk to the politicians to hear what people with CF have to deal with on a daily basis. 

Flying high to Canberra, contemplating the day that lay ahead

At length I thought about it ... (and yes, it was a downer)... thought about life before kalydeco. Basically for me it came down to I couldn't breath, I couldn't eat properly and I couldn't sleep. Three basic human functions, when they don't function properly the internal domino effect in your body is absolute. CF affects every function of your body in varying degrees, hence why we must work so hard to stay well. For me too I cannot deny a big part of why I became unwell was grief, but that just shows how fragile the situation was, it took just a couple of life changing events to happen, and my mind and body couldn't handle it because of my advanced CF. 

Anyway, one stodgy aeroplane muffin and some full-on turbulence later, we landed! Was straight to the taxi rank and onto Parliament House for the morning tea in the 'Rose Garden' (which ironically had no tea or food, and minimal roses growing, but the sun was shining and there were plenty of pretty pansies! hahaha!).

My good friend and one of my Hero's, Walter, writing in the card for Minister Dutton
Check out Walters inspiring blog:

It was a beautiful morning, arriving was slightly intimidating at first, lots of cameras, media, name tags, politicians, officials ... but then from out of this came forth so many familiar faces that I have come to know so well through the kalydeco campaign. What a pleasure it was to meet them in person! Felt like long lost family 


Above: With one of my best friends, Eli 

The Kalydeco power pack! 
From left: Naomi, Myself, Rachelle, Genevieve and Leah

Then suddenly Minister Dutton arrived!! People converged on him, the Minister spoke and listened to many peoples heartfelt stories and pleas for kalydeco. One of the mums speaking with Minister Dutton was my friend Leah who asked "how much is my son's life worth?" to which the Minister replied,"It's priceless". After a time of speaking with patients and parents it was time for the speeches, from officials and of course Minister Dutton himself...

Listening to Minister Dutton speak 

During these speeches Ben and I were supported by our local member of parliament (MP) who stood by my side the entire time, I was honoured he accepted our invitation to attend and to have his support. Once the speeches were over, Minister Dutton was about to leave. Our MP took me by the arm, the crowd parted like the red sea and in a loud commanding voice he said,"Minister Dutton, please allow me to introduce you to one of my constituents".

Ben and I on the rooftop of Parliament   

Suddenly the cameras and people surrounded us, it was a bit overwhelming initially, but Minister Dutton was actually easier to speak with than expected. I showed him a picture of our boys, he asked what their names were.. "Charles, Marcel, Gabriel and Sebastian.. and they are all happy and healthy" I replied. "And are they good boys?" said Minister Dutton. "Yes! they are" I smiled...

My North, South, East and West   The picture I gave to Minister Dutton 

I also gave the health minister my before and after pictures

then I felt tears welling up as I looked at their picture and my voice choking up,"I just want to see my boys grow up".. "Of course you do" said the Health Minister sympathetically. I tried to pull myself together enough to go on to speak with him about the effects kalydeco has had on my health. This brief meeting meant a lot to me as I have been attempting to meet with the health minister for months and months with no luck.
I still hope that I can at least book in a sit down meeting in his office in the near future.

Speaking face to face for the first time with The Health Minister

After the morning event, Naomi, Genevieve and I went to parliament house to meet with the shadow health ministers chief adviser for an hour to discuss the Australian kalydeco situation. She was very supportive and assured us Minister King is aware of the kalydeco situation and will do all she can to help the advance the process. She totally empathises with the cruel situation so many people have found themselves in. She also strongly encouraged the CF community contact their local member of parliament and ask them to raise kalydeco in the senate on their behalf, she emphasised that we must keep the pressure on now!

With my fellow #YesToKalydeco spokespeople, From left: : Myself, Gen and Naomi on the rooftop of Parliament
(p.s. Red was the 65 Roses Day dress code BTW, We don't all shop at the same store! hahaha!)

In the evening we attended an event at Parliament House where we met more senators, members of parliament and PR reps. Regretfully, I don't have many pictures of the night, we were too busy making the most of the opportunity by talking to as many parliamentarians and others as we could. As expected with all parliament events time is precious and very limited, so you better work the room while you can! I lost my voice by the end of it all good and proper! (Pleased to report it has since recovered). The day finally ended at 11:30 p.m. we had been up almost 24 hours and crammed in as much as we humanly could.

The Grand Foyer of Parliament House

For Some odd reason I could not add the video of  Gen Handley's speech from the evening event (?) but nevertheless here's the YouTube link. Please do take the time to watch it, as it was the highlight of the night! Speech link:

In front of the Australian Serviceman's memorial;
 "symbolises determination, courage and  the spirit of achievement and hope for the future"

People have asked what I have come away with from this important day in Canberra. Well it's taken me a while to digest all the information and all different points of view that I listened to over the day. 

"First thing's first, I'm the realest" 
Izzy azalea ~

Let's call a spade a spade. The following is not breaking news to anyone, Vertex and the government are "playing chicken" right now. Neither obviously want to back down. Minister Dutton's attendance to both the 65 Roses events was unprecedented, for this we are most appreciative to him. Minister Dutton said the government is committed to resolving this "as quickly as we can", which is pretty open ended! The Prime Minister's message was entirely tokenistic. We were given the political sales pitch about the 20 million dollar research fund that the government have recently created, while I am happy for those who may benefit, it was not relevant to the CF community as none of that funding will go towards our disease as far as we are aware, nor was it relevant for the primary topic in focus, Kalydeco funding now. It hurts because clearly the government have funds, it's just that by results we are not a priority. To put this situation into perspective, Ireland, who have more G551D patients than anywhere in the world and whose economy was devastated by the GFC, has funded kalydeco since June 2012! This fact makes it very difficult for Australians waiting for kalydeco, to accept the continual excuses we have been given since this process began. 

Under the iconic House of Parliament Flag

We were informed that over the days leading up to and after Wednesday vertex and our government were locked in negotiations. We know that vertex have lodged a counter offer of criterias, but the specifics are not known to the public. We asked how to go about arranging access to the full PBAC minutes that were referred to in the Vertex press release regarding Kalydeco, however due to the obvious commercial nature of the discussions vertex aren't releasing all the details, but we are going to attempt to attain them (at least the PBAC condition proposals) under the freedom of information act. In large the patients and their families are kept in the dark. The lack of transparency about the details of this "process", makes the wait more torturous than it already is. Sadly there is no easy answer, but one thing is black and white, if the government don't fund kalydeco people will die prematurely, the longer this nonsense continues the more irreversible damage to CF patients bodies will occur.

Putting it into perspective: Two small Tablets a Day 

Has our trip to Canberra made a difference? Well any publicity is good publicity! So in that sense it will only help with the kalydeco cause. In terms of steps forward, only time will tell. One can only hope that the Australian health ministers heart was moved with compassion by so many of the people who spoke with him, along with many other members of parliament. We hope that Vertex will respond in kind and  match the magic number our government is prepared to pay (whatever that may be?). We appreciate that kalydeco must go through this government process with due diligence, but urge all parties involved to priorities the patients. The CF community are waiting with baited breath for the outcome of this weeks events and meetings between the government and Vertex. The results of these negotiations will provide the answer to our questions, have we made progress or was it just another part of "the process".
For now, our message is simple as it is URGENT

  • Please stop delaying Australians access to Kalydeco
  • Fund Kalydeco with humane and reasonable conditions for all eligible patients
  •  Start saving lives, Please fund Kalydeco NOW!!!

Please watch Kyal's very moving plea for Kalydeco

The last word I want to give to a dear friend, her daughter is 10 and she wanted me to take her story to Canberra with me let the politicians know how seriously Cystic Fibrosis can impact children's lives, this was such a generous contribution particularly because her little girl will not benefit directly from kalydeco:

"My daughter is 10, her days consist of tablets, nebulizers, finger pricks & insulin needles throughout the day for CF related diabetes, been admitted to hospital every 3 months for last 7 yrs- 3 weeks each time- so 84 weeks in total. She has not been at school full time in last year. How do you tell your 10yr that she is going into palliative care?? But now she has been assessed by transplant team in Melbourne & if accepted has to move from across the country to Melbourne to wait for new lungs. The government and drug company are arguing over price & access ability conditions. CF is not just devastating for adults- some children have the rough end of the deal too. Sleeping on couch all day because you're so physically exhausted is not what a 10 year old should be doing. CF is a cruel insidious disease that slowly eats away at your quality of life until one day you wake up in the intensive care unit hoping you get a second chance at life with a transplant!"

*Please note: some words/names of people featured in this blog are linked to their kalydeco stories or projects. Please 'click' on the words coloured BLUE to be connected to read their stories. 

1 comment:

  1. Hi Faye

    First of all thanks for sharing your experience with kalydeco. I am also a "lucky" G551D guy and i've been taking kalydeco for a week now. I also created a blog. If you are interest you might wanna check out I wish you and your family all the best!

    My warmest greetings of switzerland