Watch the extraordinary moment a controversial drug company cancels its meeting with Labour live on the BBC

Labour's Jonathan Ashworth next to images of pharmaceutical drugs and British currency

If you hold pharmaceutical companies to account, they run away. At least that’s the lesson learned by Labour’s shadow health secretary Jonathan Ashworth.

In an extraordinary moment, his planned meeting to discuss a drug company’s outrageous prices for the NHS was abruptly cancelled live on the BBC.

Talking about cystic fibrosis drugs

Ashworth appeared on the BBC‘s Victoria Derbyshire Live to discuss the difficulties faced by the NHS in negotiating a fair price for cystic fibrosis drugs. The issue gained publicity in August 2018 when an eight-year-old boy with the condition pleaded with Vertex Pharmaceuticals to lower its price. The US company, which specialises in cystic fibrosis, produces Orkambi, the drug he needs. Cystic fibrosis is a genetic disorder which affects the lungs as well as other organs. It increases the risk of developing other conditions and reduces life expectancy.

However, before Ashworth could begin, he received a message from Vertex cancelling the meeting:

Ashworth was due to meet people from Vertex to demand they make the drug available to the NHS. He claimed the company’s public affairs team said it was “unfair” that he’d announced this publicly.

But Ashworth wasn’t done, and used the opportunity to send this message directly to the company:

Did Vertex cancel because of Ashworth’s profit criticisms?

On 10 February, Ashworth criticised the company’s profits, saying patients would be “disgusted”. As the Guardian reported:

the company has posted a 40% increase in revenues for the last quarter of 2018, with records suggesting it has around £2.3bn in the bank.

Moreover, this profit increase was reported to be a direct consequence of revenues from its cystic fibrosis drugs. In response to this Ashworth said:

Those living with cystic fibrosis who are currently denied this life-saving drug will be disgusted at these profits. This big pharma firm, by refusing to play fair with the NHS, is holding lives to ransom. The price they want for Orkambi is simply unjust.

I’m meeting Vertex bosses on Monday and will demand a fairer deal. If they refuse to budge, ministers should step in and use what means they have to ensure an affordable version of Orkambi is available for those who need it.

Asking the NHS for sickening amounts of money

This controversy unfolded due to the refusal of Vertex to accept an offer from the NHS worth £500m over five years. The company prices the drug at £104,000 per patient per year. As around 5,000 people would benefit from Orkambi, that would mean a bill to the NHS of over £500m per year. This huge cost has been criticised by the National Institute for Health and Care Excellence, which considers it not good value for money. And the story is similar in other countries, with Orkambi costing £207,000 per person per year in the USA and £146,000 in Canada.

The pricing is all the more disgraceful considering the drug was developed through funding from “a cystic fibrosis charity and taxpayers’ money from the National Institutes of Health in the US”. In short, public money.

The Canary recently reported US politician Alexandria Ocasio-Cortez discussing this very issue:

Time to use the full force of law against drug companies

In his appeal to the company after the unceremonious cancellation of his meeting, Ashworth warned that:

if you do not do this, if you don’t take up the NHS’s very very generous offer, there are people saying they should intervene by using some legislation about the patents and so on.

According to the Guardian, the 1977 Patent Act means that “the state can effectively override a patent in the national interest”. As it stands, owning a private drug patent allows companies to charge huge sums to access their so-called “intellectual property“. Instead, the government could compensate the company less and could produce a generic replica version of the drug at a far lower cost. Dr Andrew Hill of the University of Liverpool, for example, told the Guardian that he estimates a generic version of Orkambi could be made for a “maximum” of £5,000 for a year’s supply – that’s £99,000 cheaper.

An ‘accessible’ company

It’s ironic that Vertex’s promotional company material claims it’s an “accessible” company for employees:

It’s just a shame that, when it comes to fairly priced ‘access’ to its own drugs, it doesn’t apply the same philosophy. And so it’s time to use the full force of the law against such companies and put people’s health before profit.

Featured image via YouTube – Red PlusTV / YouTube – Ouse / YouTube – Good Morning Britain

Get involved

  • Sign up to the campaign for Just Treatment to pursue a generic version of Orkambi to help sufferers to Cystic Fibrosis.



We need your help to keep speaking the truth

Every story that you have come to us with; each injustice you have asked us to investigate; every campaign we have fought; each of your unheard voices we amplified; we do this for you. We are making a difference on your behalf.

Our fight is your fight. You’ve supported our collective struggle every time you gave us a like; and every time you shared our work across social media. Now we need you to support us with a monthly donation.

We have published nearly 2,000 articles and over 50 films in 2021. And we want to do this and more in 2022 but we don’t have enough money to go on at this pace. So, if you value our work and want us to continue then please join us and be part of The Canary family.

In return, you get:

* Advert free reading experience
* Quarterly group video call with the Editor-in-Chief
* Behind the scenes monthly e-newsletter
* 20% discount in our shop

Almost all of our spending goes to the people who make The Canary’s content. So your contribution directly supports our writers and enables us to continue to do what we do: speaking truth, powered by you. We have weathered many attempts to shut us down and silence our vital opposition to an increasingly fascist government and right-wing mainstream media.

With your help we can continue:

* Holding political and state power to account
* Advocating for the people the system marginalises
* Being a media outlet that upholds the highest standards
* Campaigning on the issues others won’t
* Putting your lives central to everything we do

We are a drop of truth in an ocean of deceit. But we can’t do this without your support. So please, can you help us continue the fight?

The Canary Support us