Cystic fibrosis patients around the world are fighting to gain access to a range of drugs known as CFTR modulator therapies that could have a hugely beneficial impact on their future health prospects – and they are on a mission to make their fight more visible.
Patients and CF families are posting selfies with CF slogans and hashtags written on their faces, hands and bodies. “Cystic fibrosis affects the entire body, so it makes sense to use our bodies to raise awareness about our global community’s urgent need for access to the best medicine available for this devastating disease” said Ana Petri, a Brazilian who has been forced to go to court to fight for access to a life-saving drug called Kalydeco.
The modulator therapies – Trikafta, Orkambi, Kalydeco, and Symdeko, are produced by American manufacturer Vertex Pharmaceuticals and are so expensive that many governments cannot reach an agreement on reimbursement for the medicines.
Each country is at a different stage in negotiations, though some of the poorer nations will probably never be able to afford these medicines at the current prices.
CF families around the world have already formed campaign groups in their own country to lobby for their human right to have access to the best medicine.
Now those groups and individuals are linking up with families from around the world to amplify their collective voices and ensure that they are heard. All of this set against the background of the worldwide covid-19 pandemic – which many are facing in poor general health because of their disease.
Vertex Save Us (VSU) is one international group with members from 58 countries. The group are relentlessly calling on Vertex Pharmaceuticals to publish a global access plan that will ensure access at affordable prices to all CF patients around the world who can benefit.
HOW YOU CAN HELP:
Help to keep this issue in the public eye by joining in and posting your own selfies or by sharing this article and other posts that you can find on the hashtags: #globalcfdrugs4all #globalcffamily #cfcantwait #vertexsaveus #trikafta4all #kaftrio4all
SIGN THESE PETIITIONS:
https://www.change.org/p/yestotrikafta-a-call-to-the-to-put-life-changing-drug-trikafta-on-the-pbs
Australians 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.
https://action.cysticfibrosis.ca/page/81342/petition/1
Call on the Canadian government to provide Canadians with access to life changing drugs now.
JOIN VERTEX SAVE US GROUP
by clicking the ‘Register Now’ button at the foot of their website: https://www.vertexsaveus.org/
Read personal stories from people around the world who need these life-changing medicines at https://www.breathewithme.org/blog
