Patient power works - here’s the proof.
November 14th 2019
Last summer, after nearly three years of tireless campaigning to get access to the cystic fibrosis drug Orkambi on the NHS, a group of parents whose children need the medicine approached Just Treatment, frustrated with the lack of progress. The drug company, Vertex, was demanding an eye-watering £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.
Fast forward to today, and Vertex have been forced into dropping their price, enabling the NHS to do a deal that means thousands of patients across the country will now get access to this life changing medicine. So what changed in that time? How did the leadership of CF patients and their families apply a strategy that delivered this result? Here’s how...
For years the price of new drugs has been rising to levels that healthcare systems like the NHS are increasingly unable to afford. Drug companies are granted monopolies to allow them to recoup research and development costs - but more and more often companies like Vertex exploit their power to demand exorbitant prices.
“We had to force Vertex to shift its position, and make the government accept that simply saying the price was too high was not good enough.”
There had already been an incredible grassroots campaign of protests, letters, emails and meetings, led by CF patients and their families, which could not have been more powerful. If Vertex were going to be shamed into dropping their price this incredible effort would have delivered it. But they didn’t budge. Likewise, the NHS was firm in its position. The price was too high, and agreeing to pay it would have sent the wrong message - that withholding access brings higher profits in the end.
This stalemate meant that patients’ lives were on the line - deadlock was not acceptable. We had to force Vertex to shift its position, and make the government accept that simply saying the price was too high was not good enough.
Christina’s 9 year old son, Luis, has cystic fibrosis and needed Orkambi desperately - for two years he’d been fighting a lung infection which nearly killed him. Christina and a group of parents saw that Vertex were playing a cynical game, hoping the public pressure that was building as more patients died without access would eventually force the government to pay a higher price for Orkambi.
“we showed that government inaction was a political choice; and threatened the main thing the drug company cares about - its profits”
We organised alongside these incredible 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.
Taking on a multi-billion dollar drug company like Vertex was never going to be easy. But we should never underestimate the power that a group of determined parents and patients can wield. Over the last year we’ve organised with this formidable group under the banner of our Plan B on Orkambi campaign, calling out corporate greed and demanding government action.
In the space of one short year we’ve had incredible media coverage - from front page spreads to radio interviews, live television appearances on national programmes including This Morning, Victoria Derbyshire and Newsnight. Our campaign for a Crown Use licence was the theme of a parliamentary debate in the House of Commons 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.
Many thousands of families were campaigning up and down the country during this time, pressuring their MPs, getting press and working with their communities to make Orkambi available. This backdrop supported the continued efforts of the Health Select Committee in pushing NHS England to explore the alternatives we were demanding, such as a Crown Use licence and large scale clinical trial.
In June, supported by Just Treatment, a group of parents set up the CF Buyer’s Club to support patients in accessing cheaper, generic versions of Orkambi from Argentina. Vitally, this showed that there was an alternative - regulated, high quality drugs existed and were treating patients elsewhere. The lengths patients were having to go through to access them in the UK starkly highlighted the injustice of the situation.
More national press coverage ensued (including another Newsnight appearance) and Jeremy Corbyn, the leader of the opposition came out publicly in support of the campaign. Just one week later the government blinked, and the Health Minister Seema Kennedy accepted they had a ‘moral obligation’ to look into overturning Vertex’s monopoly.
The first parents traveled to Argentina with the Buyer’s Club in September and the story again made national press. Just weeks after, the Labour leader pledged in his conference speech to overturn Vertex’s patent should Labour get into power: the pressure was on. The Vertex boss rushed to the UK to meet Health Secretary Matt Hancock. When grilled by the Health Select Committee a few weeks later, the head of the NHS Simon Stevens again acknowledged their readiness to use a large scale clinical trial if necessary.
Exactly one month after the opposition leader’s speech, NHS England announced a deal: Orkambi would finally be available to all those who need it.
We’ve learnt that when we organise together with patients at the forefront, we create power that even the pharmaceutical giants cannot rival. By identifying and targeting pressure points on both the government and Vertex we were able to force both parties to shift their position.
We challenged the system, and we won. It’s an incredible feat, but we know there are more battles to come and we must be ready for them. The next of Vertex’s cystic fibrosis drugs, Trikafta, has been priced even higher than Orkambi. A UK-US trade deal is looming on the horizon which threatens to hike up drug prices even further; and campaigns are already ongoing for drugs like Kuvan which are priced off the NHS right now.
Next time we’ll build on what we’ve learnt to organise bigger, better and faster. Taking on big pharma won’t ever be easy, but with the power of patients and their families, we’re more confident than ever that we can do it - and win.