Vertex have put profits first all around the world

There’s less than a week to a critical oral hearing in Parliament when Vertex and the government will be grilled by the Health & Social Care Select Committee about their role in the pricing dispute that is preventing UK patients accessing Orkambi. In her second blog on our Plan B campaign Anna, the mother of a child who needs Orkambi, takes a look at Vertex’s behaviour around the world.

Anna Bennett blogs about the Plan B On Orkambi campaign

There has been a lot of debate in the press over the last month about the question: How much is a person’s life worth? It's an attractive ethical dilemma to splash across the front of a newspaper; especially when coupled with the faces of those whose lives could be transformed by an unaffordable medicine.

Vertex, the company at the centre of a bitter row over access to the cystic fibrosis drug Orkambi, has blamed the NHS and the UK government for the fact that a deal has not been reached. Last year, after negotiations stalled yet again, Vertex released an inflammatory statement calling for the NHS to acknowledge the seriousness of Cystic Fibrosis, implying that if they did, they would accept Vertex’s price for Orkambi.

“The NHS, whose staff saved my daughter’s life and work tirelessly and conscientiously to give her outstanding care, is very aware that CF is a serious disease.”

I can tell Vertex that on this count at least they are wrong. The NHS, whose staff saved my daughter’s life and work tirelessly and conscientiously to give her outstanding care, is very aware that CF is a serious disease. To my mind the NHS’s offer to pay them £500m over five years, objectively the most substantial deal in its 70 year history, proves that. But I also see evidence for where the true fault lies when I look around the world.

Thousands of patients in a wide range of countries are also waiting for access: Canada, Spain, Switzerland, Poland, Belgium, Russia, New Zealand and Portugal - frozen out by Vertex’s high prices. Similarly, to the UK, Vertex is pointing the finger at their governments and regulatory bodies. But others agree with the NHS - governments and independent bodies around the world have said discounts of 70-98% are needed to make Orkambi affordable for their health systems.

It is tempting to wonder how our lives might be different if we knew that, if the government failed to secure a deal for Orkambi, there was hope for access to Vertex's pipeline of medicines, each of which looks more effective than the last. Distressingly, Vertex has refused to even submit the follow up medicine, Symkevi, for assessment for use on the NHS.

Report detailing how Vertex treated cystic fibrosis patients in France when they didn’t get their way.

This move, which smells more than a little of blackmail, has been mirrored in Vertex's interactions with France. In 2018, after failing to secure a deal for Orkambi, Vertex cancelled plans to test an investigational triple combination therapy at several sites in the country. Vertex argued that they couldn't enroll patients when there was no guarantee they would have long-term access to innovative treatments. Thankfully the company did resume clinical trials after sustained public outcry. However, these are the tactics they are using: manipulation and threats dressed up in the language of business; a faux-objectivity when it is no exaggeration to say that they hold the lives of cystic fibrosis patients in their hands.

Professor Paul M Quinton, a professor of paediatrics at the University of California who was behind several key discoveries that helped create Orkambi, told the Daily Express last week that Vertex’s behaviour is “sick”. A CF patient himself, Quinton slammed Vertex, asserting that they are behaving with “greed”. He said: “I'm ashamed of what has become of my work and the avarice it has generated. Their pricing structures are beyond the system of all morality”.

Although the US has access to Vertex's medicines, patients are struggling to afford the additional costs they have to pay on top of their insurance to access the drug - including patients who fundraised to pay for the research that led to its discovery. New York state is in the process of challenging the price paid by their government health programme for Orkambi, following a ruling that the sky high price was not justified.

Happily, an agreement for access to Orkambi was reached in the Netherlands but only following months of negotiation, and the Dutch government began to actively explore solutions to the crisis of high drug prices, including compulsory licensing - a version of the Crown use licence we are calling for in the UK. This demand for a Plan B for Orkambi could either allow the government to buy a much cheaper, generic version of the medicine which could save the NHS nearly £4bn over ten years. Vertex could avoid losing the potential to sell to the NHS by moving quickly to lower their prices.

Vertex justify the high prices of their medicines by the need to invest in the research and development of future medicines. However, it involves a sort of doublethink to consider this alongside the fact that they already have over $3 billion cash in the bank, and the CEO of Vertex was listed as the third highest remunerated healthcare CEO in the US in 2017, reportedly earning over £35m per year.

So how much is a person’s life worth? More than any pharmaceutical giant could hope to calculate. And more than the value Vertex have placed on the lives of those who have died without access as they hold out for more money. We can’t work on these principles. We need these medicines to be affordable to protect our overstretched NHS. It should not be a matter of affording lives.

Anna Bennett lives in Birmingham with her husband and 3 year old daughter who lives with cystic fibrosis. She works as an ESOL teacher and enjoys reading, playing the violin and watching for the Spring.