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Half of all cystic fibrosis patients live in countries with no access to the medicine that could save their lives.


Three of the scientists who helped develop this groundbreaking treatment are due to be awarded the Breakthrough Prize at a glitzy ceremony in LA this month.


But they are also senior executives at Vertex, the company that is charging $326,000 per patient for this drug, holding the lives of cystic fibrosis (CF) patients to ransom as it seeks to maximise its profits - and the wealth of its execs.

Vertex’s business practices mean that despite the amazing science, CF patients access the medicines.  To find out more watch the video below.


We wrote to the Breakthrough Prize highlighting this injustice. Following discussions with the Breakthrough Prize Foundation, they have agreed to make a significant financial commitment to support our work to win universal access to CF modulator treatments, and have committed to discussing how they can make sustainable funding available for groups working to ensure equitable access to medicines and other health innovations. They have also said that the importance of equitable access will be highlighted in the awards ceremony. These are important steps, but we will still be using the event celebrating these scientists’ achievements as an opportunity to highlight their complicity as senior Vertex executives in corporate decision making that has consistently prioritised profits over saving the lives of CF patients.

Our original demands:

  1. Withhold the Breakthrough Prize from the Vertex Vice Presidents until Vertex drops their patent claims and supports efforts to deliver access to affordable generic versions of these medicines. 

  2. Make access to knowledge, and the products of scientific endeavour, a criteria in future Breakthrough Prize decision making

  3. Fund efforts to overcome the barriers to accessing CFTR modulator medicines faced by patients and their families around the world

  4. Include in all future Breakthrough Prizes an award for groups or individuals doing the most to ensure that the fruits of scientific innovation are as equitably shared throughout humanity as possible.



There are many ways to support our campaign and get involved.


  • What are these drugs?
    A new class of treatments known as CFTR modulators were developed with significant public and philanthropic support. They were the first to treat the underlying causes of the genetic disease, cystic fibrosis and have transformed the lives of CF patients. Without proper treatment and care CF patients die as children or young adults. However, one drug company, Vertex Pharmaceuticals, have a near total monopoly on these medicines and is generating huge profits - it now has over $13bn in the bank - charging up to $326,000 per patient per year for one of these drugs, Trikafta. They are holding patients' lives to ransom to maximise their profits.
  • How were these drugs developed?
    The type of drug developed by the three Vertex scientists are ‘modulators’, but their origin goes back far earlier than Vertex. The drugs work by correcting malfunctioning proteins made by a particular gene. A lot of foundational science lies behind the development of modulators. This science was conducted by people like Professor Paul Quinton who discovered the defect in the CF sweat gland that causes thick mucus to clog organs like the lungs, pancreas etc. Dr Quinton was personally assured by Vertex CEO Jeffrey Leiden that ‘anyone who needed the drug would get the drug’. A promise that was not kept.
  • What is the Breakthrough Prize?
    Dubbed the ‘Oscars of Science’ by the organisers the Breakthrough Prizes are given to researchers and scientists who have made exceptionally important contributions to medical and scientific understanding. The awards are handed out at a glitzy ceremony in LA with dozens of celebs and huge razzmatazz. Each award comes with a $3 million prize for the winners, and significant positive PR and kudos.
  • Why are you targeting these scientists and the prize organisers?
    The three scientists who are due to be awarded their prize on the 13th April are all now senior executives - Vice-Presidents and Senior Vice Presidents - at Vertex Pharmaceuticals. This drug company has wielded its monopoly on these medicines in a ruthless manner that has seen them sharply criticised by governments and campaigners around the world - with the UK government describing them as “an extreme outlier in terms of pricing and behaviour”. Despite charging hundreds of thousands of dollars for drugs that can be made for less than $6000, and racking up huge profits, Vertex have barely lifted a finger to address the gross levels of inequality in access to these medicines their business decisions have generated. Whilst we celebrate the scientific endeavour that resulted in these drugs’ development, we condemn the ruthless way they are being used to maximise profits even as they cost the lives of CF patients every day. The scientists being recognised do, through their seniority within the company, have a responsibility to speak out against such deadly business practices but have not yet done so. The Breakthrough Prize organisers must recognise that there is no point in creating groundbreaking scientific innovations if the people who need them cannot access them. There is a duty on them, when granting these awards, to recognise the deep levels of injustice - based on wealth, geography, and race - that mean half of all patients are allowed to die in order to sustain scientific advancement, and the lives of patients in the West. They have a responsibility to act. The global CF community has been fighting to win access to these lifesaving medicines for every patient around the world. We are taking on Vertex, and trying to break their monopoly, which allows them to hold patients’ lives to ransom. The Breakthrough Prize is an important opportunity to broaden awareness of these patients’ fight for life, and to seek accountability for Vertex and its senior executives for their actions. Find out more about our campaign for access to these lifesaving medicines here.
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