Where you live should not determine whether you live
Every time I see a story or a post about someone who is living with cystic fibrosis and has had their quality of life improved by access to a CFTR modulator therapy - I feel good.
It doesn't matter if I have had any personal contact with them. Just knowing the constant struggle against cystic fibrosis is so all-consuming, a lifelong grind - it feels good that something has helped that person to relax a little more, to improve their health, to feel more confident, to breathe more easily....to enjoy life a little more.
CFTR (cystic fibrosis transmembrane conductance regulator) modulators are drugs that work at the root cause of cystic fibrosis and attempt to correct the genetic defect. Currently, the most effective of these is Trikafta (known as Kaftrio in Europe). Others are Kalydeco, Orkambi and Symdeko (Symkevi in Europe).
These drugs - particularly Trikafta - are a MAJOR breakthrough for the (approximately) 70,000 people around the world who have cystic fibrosis. They are not a cure, but can slow or halt the progress of the disease.*
However, these drugs are HUGELY expensive. At the time of writing this post Trikafta is only available in the United Kingdom, Ireland, Germany, Denmark, Switzerland, Austria, Slovenia, Finland, Luxembourg, USA, and Iceland. These are the countries that have reached a reimbursement agreement with manufacturers Vertex Pharmaceuticals. Many of these countries had to campaign for a long time at a high level to finally get access to Trikafta and other CFTR modulator drugs.
Through our social media pages and by linking up with campaigning group Vertex Save Us https://www.vertexsaveus.org/ - Strawfie Challenge has heard from desperate people in many countries who are either actively campaigning for access to these life-saving drugs or - even worse - have no hope of ever gaining access to them, because the economy in the country they live in is so poor or offers no support to those living with a rare disease like cystic fibrosis.
What we have learned is that making a lot of noise, making our voice heard, can bring results. In Malta recently the Prime Minister Robert Abela personally got involved when a young woman with cystic fibrosis generated huge amounts of press about the need for access to Trikafta. The Prime Minster called Mandy Vella personally to pledge that Trikafta/Kaftrio will soon be made available on the government’s formulary list. See link for story: https://timesofmalta.com/articles/view/life-saving-cystic-fibrosis-drugs-to-be-added-to-government-formulary.859111
In order to help to give a voice to all of those in many countries around the world who are still waiting and campaigning vociferously for access to these life-saving treatments, we are asking anyone who has a connection to cystic fibrosis – or who just has empathy for people living with the disease – to join in with an online initiative during May.
HELP TO AMPLIFY THE CALL FOR GLOBAL ACCESS TO LIFE SAVING CYSTIC FIBROSIS TREATMENTS
You can help by posting selfies/photos displaying hashtags that call for access to these life-changing therapies. The hashtags are: #globalcfdrugs4all #globalcffamily #trikafta4all #kaftrio4all #vertexsaveus #CFcantwait – Display these hashtags creatively across all of your social media sites. One way we are doing this is to write the hashtags on our bodies – hands, face, body – cystic fibrosis affects all part of the body so it makes sense to highlight that in this way.
Tell your own story with your posts/tweets and also why not ‘buddy up’ with a person with CF in another country and tell their story on your social media?
You can also just hold up a sign with the hashtags or find any other creative way to display them - write them in the sand on a beach for example and snap a pic.
Follow @strawfie https://twitter.com/strawfie on Twitter where we will also share the Twitter accounts of Health Ministers in certain countries that it would be useful to tag in your posts. I think most of us also know how to tag @vertexpharma on Twitter and Instagram
Individual country hashtags - like #Trikafta4India will also work:
All help is gratefully appreciated and even one post by each individual person will help to raise awareness about the need for global access to CFTR modulator therapies – and better access to more general CF treatments in some countries.
SIGN THE PETITION - To help Australians who have just received the devastating news that Trikafta will not be recommended for reimbursement by the PBAC (Pharmaceutical Benefits Advisory Committee). CF Australia are also calling for immediate compassionate access for all eligible Australians while commercial negotiations continue.
Let’s make some noise in #CFAWarenessMonth!
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* (Please note: all drugs may have side effects and may not be suitable for everyone).
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