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.

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.

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.

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.