Happy 65 Roses Day everyone!
I plan to write an update about my health soon, but in the meantime I thought I would write about the Kalydeco situation in Australia.
Kalydeco is still not available in Australia, due to lengthy price negotiations between Vertex and the Australian Government. These negotiations first started over a year ago. This means Australia is now over two years behind the US and over one year behind the UK and Europe in terms of Kalydeco access.
We need Vertex to lower the price and we need the Australian Government to compromise on price. We need this to happen now.
For the last two years I’ve been very involved with #YesToKalydeco Campaign on both facebook and twitter. Many of us behind the campaign met for the first time in person in Canberra last Wednesday. Cystic Fibrosis Australia organised two events, a morning tea and evening cocktail event, aiming to raise awareness about Cystic Fibrosis & the urgent need for Kalydeco.
So after a very rushed birthday (I think I will celebrate this later when Keith is back from his trip to the middle of nowhere), I flew to Canberra for these events. It was an action packed day, with a morning tea, where we all met each other for the first time, spoke to several MPs about Kalydeco & heard from Peter Dutton the Health Minister, followed by a meeting with the senior advisor to the shadow Health Minister, then finding out that I was giving a speech that night, quickly writing my speech in about an hour, getting to the cocktail event and almost collapsing as I had a hypo pre speech (skulled some soft drink and luckily made it through!). The speech went really well, I was glad that I could let Peter Dutton know exactly how I feel regarding the Kalydeco situation, for a full 3 minutes!! It was also great talking to several other MPs that night, especially Senator Anne Urquhart & MP Ken Wyatt.
I’m sure the MPs that were present came away from these events understanding the urgency behind the PBS listing of Kalydeco. I’m very hopeful that we will hear the outcomes from recent meetings between Vertex and the health department in the near future & that soon they will agree on a price.
A real highlight for me was meeting everyone for the first time in person, after working together with the campaign for over 2 years!! I hope the next time we see each other is at a celebratory Kalydeco party!
I have added a copy of my speech that I presented in Canberra below. I spoke at Parliament House to the Minister of Health, Peter Dutton, several other MPs and members of the CF community:
Hi everyone, my name is Genevieve Handley and I have been extremely fortunate to have been on Kalydeco for almost 2 years, through the Vertex compassionate program.
Before I started Kalydeco my health was hugely unstable and my lung function was 41%. To put this in perspective 30% is commonly when transplant is discussed.
I struggled to keep up with work and uni, and had to spend up to 2 hours a day on exhausting, never ending, treatments.
For 20 years I had about 3 hospital admissions a year. This meant I had over 60 hospital admissions, equalling more than 3 years of my life in hospital.
Amazingly, Kalydeco has allowed me to stay out of hospital for almost two years now. This is a 20 year record for me. For the first time in my life my health is stable and my lung function is 70%.
I now spend less than 5 minutes on treatment per day, saving many hours per week. I am back at uni and planning to start working soon.
Kalydeco has allowed me to do things that I never thought I would be able to do, like visiting Machu Picchu, at a very high altitude, with no breathing issues whatsoever. Even recently, I have had some non CF health issues, but thanks to Kalydeco, my lungs have been stable. Previously, I would be in hospital, probably on oxygen, potentially not recovering.
Before Kalydeco I rarely thought further ahead than 5 years, in fact I rarely even committed to events for the weekend, as I did not know if I would be well.
Kalydeco has changed my life expectancy significantly. I can now stop worrying that a transplant, or a life threatening chest infection is around the corner and instead think about having children, my career, I even need to think about superannuation!
Having experienced what Kalydeco can do first hand, I know exactly how important it is that the 200 patients in Australia access Kalydeco now. Every day the decision is delayed, people are getting sicker. This is urgent, I have lost too many friends to CF, most in their 20s.
Peter Dutton and Members of Parliament, our lives are in your hands. Without Kalydeco we will die prematurely. Currently 90% of eligible patients in the world outside Australia have access to Kalydeco. Kalydeco is available in the US, UK and majority of Europe. Yet, Australia, a country which prides itself in being one of the most developed in the world, has not approved Kalydeco. We need you to make a difference, please do everything you can to help the 200 Australians to access Kalydeco.
Some photos from Wednesday:
Naomi, Faye, Rachelle, myself and Leah, five of the many passionate people behind #YesToKalydeco
Great turn out from the Cystic Fibrosis community at the morning tea event in Canberra
Presenting my speech at Parliament house. To my left is the Health Minister, MP Peter Dutton and Senator Anne Urquhart, to my right are MP Ken Wyatt, Mitch Messer, CFA President & Michelle Skinner, CFA CEO. I would like to sincerely thank Senator Urquhart & MP Ken Wyatt for hosting the events, as well as Senator Urquhart for organising for me to give a speech at the cocktail event. It is great to see politicians supporting Cystic Fibrosis and #YesToKalydeco.