"For there to be a new era in Cystic Fibrosis, there must be equitable access to CFTR modulators"
Our aim is to gain access to life changing medicines (CFTR modulators) for all.
To do this we need your help to lobby for change. We need to expose the unnecessary cruelty and suffering being experienced by the Cystic Fibrosis (CF) Community. Can you help us?
We are looking for people from all corners of the World to make this happen by lobbying the drug manufacturer Vertex for change. Their current price expectations make these drugs unaffordable for health care systems, leaving half the world untreated.
More than 100,000 people in the world suffer from CF but less than half have access to life changing medication. These amazing medicines have the power to help correct the gene fault which causes the illness and stop a slow and excruciating death. The present situation is immoral and cannot be allowed to continue.
The group consists of campaigners from all over the world, including: Australia, Azerbaijan, Belgium, Bulgaria, Brazil, Canada, Chile, Croatia, Ecuador, England, France, Germany, Greece, India, Kazakhstan, Latvia, Luxemburg, Mexico, Montenegro, Namibia, Netherlands, New Zealand, Northern Ireland, Norway, Poland, Ireland, Romania, Russia, Spain, Scotland, Serbia, South Africa, Swaziland, Switzerland, Sweden, USA, Wales, Peru.
.......and is growing by the hour!
We call upon Vertex to....
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2. Make CFTR modulators available in all countries with CF by gaining regulatory approval in accordance with each country's system, without delay.
1. Provide free treatment to the sickest patients, regardless of where they live. Compassionate access should not discriminate.
3. Price all CFTR modulators at affordable levels proportionate to each country's situation.
4. Establish a publicly available policy on global access to medicines in the first half of 2023 setting out timelines, milestones and global objectives.
5. In countries where Vertex does not have a short-term plan to supply its medicines, facilitate generic supply through open and transparent voluntary licensing agreements and by providing all relevant trial and other data.
All of these demands are supported by the United Nations Human Rights Guidelines for Pharmaceutical Companies in relation to Access to Medicines.
