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How Cystic Fibrosis families took on Vertex in Hollywood

Updated: Apr 26

On the 13th of April, at a glitzy ceremony in Los Angeles, three Vertex scientists, who are now senior executives at the company, were presented with a Breakthrough Prize award for their “outstanding contribution to life sciences” for their work on cystic fibrosis (CF) treatments. The Breakthrough Prize is dubbed ‘the Oscars of science’, and comes with all the glamour you would expect - major name celebrities, red carpet, champagne, the works.

As a group of CF patients and parents, we celebrate the efforts of the many scientists involved in creating these drugs but this award represents a slap in the face to every single CF patient across the world being shut out of access due to Vertex’s monopoly and eye-watering prices. They charge $326,000 per patient per year for a drug which costs just $6,000 to make - an unbelievable $320,000 mark-up.

As a result of the CF community’s outrage, families from across the globe wrote to the Breakthrough Prize Foundation before the ceremony with several demands, including:

  • To make access to knowledge, and the products of scientific endeavour, a criteria in their future Breakthrough Prize decision making

  • To fund efforts to overcome the barriers to accessing CFTR modulator medicines faced by patients and their families around the world

  • To 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.

In addition, twenty nine clinicians from four continents signed an open letter to the ceremony organisers, which was reported in the Boston Globe just days before the ceremony.

The Breakthrough Foundation was quick to respond and recognise both the importance of global access to breakthrough treatments and our work in demanding justice for CF families everywhere. They invited ‘Right to Breathe’ representatives to an online meeting where CF family members shared their powerful stories and experiences of life without access to the drugs that they desperately need. During this meeting, the Breakthrough Foundation committed to working with us towards fulfilling our campaign goals, and to including a statement on global access to medicines during the ceremony. You can read our statement here.

On the evening of the awards ceremony, we were honoured and delighted to have the support of students from Universities Allied for Essential Medicines (UAEM) who protested outside the venue against Vertex’s deeply unethical and profit-driven behaviour. This was a powerful and touching show of solidarity for young CF patients around the world that will never have the same opportunities as these students unless this global injustice is challenged and rectified immediately. We thank UAEM & our allies in HealthGAP for their invaluable support!

As requested, during the award presentation to Vertex executives, Hollywood legend Glenn Close made a statement highlighting the need and importance of access to treatments for all.

Thank you to everyone that has supported this action, written emails, provided photos and shared social media posts - we will keep you updated on further developments. Together we are a strong and determined community and we will not be satisfied until every CF patient has access to the lifesaving medicines that they need.

1 Comment

Thank you so much for all that you are doing to support the CF community globally. Lizzy x

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