David & Goliath

Plan B on Orkambi

We showed that government inaction was a political choice; and threatened the main thing the drug company cares about – its profits.

The Campaign

In the summer of 2018, after nearly three years of campaigning to get access to the cystic fibrosis drug Orkambi on the NHS, a group of frustrated parents whose children needed the medicine approached Just Treatment. The drug company, Vertex, was demanding £104,000 per patient per year and the NHS decision making body, NICE, had ruled it was too expensive. Negotiations had ground to a halt.

This stalemate meant that patients’ lives were on the line.

Just Treatment organised alongside parents and patients to challenge Vertex and the NHS. By demanding the government act to safeguard patients by overturning Vertex’s patent, and therefore their monopoly, using a legal tool called a Crown Use licence, we showed that government inaction was a political choice; and threatened the main thing the drug company cares about – its profits.

In the space of one short year we had incredible media coverage, our campaign was the theme of a parliamentary debate and was frequently referenced in a Health Select Committee hearing where the Vertex CEO was grilled on the lack of access to the drug. The Chair of the Committee called out the situation as ‘exploitation of a monopoly position in the supply of drugs for the treatment of cystic fibrosis’ which marked a turning point.

awards

It is fantastic to have their hard work recognised – and show others that well organised NHS patients can take on the greed of the pharmaceutical industry and win.”

awards

It is fantastic to have their hard work recognised – and show others that well organised NHS patients can take on the greed of the pharmaceutical industry and win.”

The Change

Jeremy Corbyn came out publicly in support of the campaign. Just one week later Health Minister Seema Kennedy accepted they had a ‘moral obligation’ to look into overturning Vertex’s monopoly.

The (then) Labour leader pledged in his conference speech to overturn Vertex’s patent should Labour get into power. The Vertex boss rushed to meet Health Secretary Matt Hancock. Exactly one month after the opposition leader’s speech, NHS England announced Orkambi would finally be available to all those who need it.

 

The Future

The UK government is handing millions of pounds of taxpayer money to pharma companies in secret deals to develop a COVID19 vaccine, with no guarantee over the long term price the NHS will have to pay. A UK-US trade deal is looming which threatens to hike up drug prices even further.

Who else was involved?

The incredible group of parents who worked tirelessly on this campaign alongside Wiz and Diarmaid

  • Christina Walker and her inspiring son Luis Walker
  • Gayle Pledger
  • Robert Long 
  • Chris Burn
  • Jolene McCaffrey
  • Emily Birchall
  • Tom
  • Nina & Daniel
  • Sue
  • Along with so many more patients and their families across the country

 

NEON, with a special shout out to:

  • George Woods 
  • Dan Vockins
  • Kevin Smith
  • Matthew Butcher

The experts and activists who helped us, including:

  • Andrew Hill and Diz Gotham and the rest of the team
  • Ellen ‘t Hoen
  • Wilbert Bannenberg
  • James Freeman
  • Achal Prabhala
  • Will Nutland
  • Ellie Mae O’Hagan
  • Our friends in the lab that tested the meds
  • All our friends in Argentina
  • The brains in KEI

All the amazing journalists who covered the story, but in particular:

  • Deb Cohen
  • Sarah Boseley
  • And the teams at Newsnight, This Morning, Victoria Derbyshire, and Inside Out
  • Our amazing funders – Azzi and Rosalind at OSF
  • The Shuttleworth Foundation
  • The individuals who give so generously to support us
  • The countless parliamentarians who held Vertex accountable for their actions and called on the government to put NHS patients before Vertex’s profits
  • And ultimately the people within government and the NHS who accepted their moral responsibility to find an alternative to simply accepting a drug company’s monopoly should lead to patients dying without access, a move which forced Vertex back to negotiations where they dropped their price to a level affordable for the NHS
  • This list is not even close to being exhaustive – we have been helped by so many people in this work, it’s hugely humbling and we’re deeply grateful to them all. But the truth is that this kind of solidarity and collaboration is what it takes to build the power to win a David Vs Goliath battle like this.