Orkambi: UK government has “moral obligation” to act

“...we have heard about the buyers’ club. Hon. Members have also talked about Crown use licensing, and [...] large-scale clinical trials. [... ] Unless Vertex changes its approach and behaves responsibly, I have a moral obligation to look at these other options”

- Health Minister Seema Kennedy

At the start of June Just Treatment and a group of parents hit the headlines as we launched a buyer’s club for the cystic fibrosis drug, Orkambi, on Newsnight. Parents and patients who have waited over three and a half years for the US drug company, Vertex, to offer the NHS an affordable price had grown exasperated. The buyers club - allowing them to pay privately for a low cost version of the medicine from Argentina - was a desperate act, but the move ramped up pressure on the government to find a solution that could work for all NHS patients.

The pressure told… last week Health Minister Seema Kennedy announced that the government had a “moral obligation” to explore the various legal routes Just Treatment and the CF Buyers Club have proposed that would allow it to set aside Vertex’s patent to buy affordable, generic Orkambi for the NHS.

For over three years Vertex Pharmaceuticals have refused to offer a fair price for the life-changing drug, Orkambi, demanding £104,000 per patient per year. The NHS has offered £500m over five years but Vertex have rejected the offer. Parents like Christina have an impossible choice: either find a way to pay Vertex £8,000 every 28 days for the drug, or see their children suffer without it.

It was time to say enough is enough.

In February we launched a campaign to overturn Vertex’s monopoly with a Crown use licence. This legal tool would allow a generic copy of the drug to be produced much more cheaply for NHS use.

Then at the start of June we launched a buyer’s club with a group of parents, including Christina. Anyone who needs Orkambi can now legally buy a generic copy of the drug for £23,000 a year from a manufacturer in Argentina - less than a quarter of the price Vertex is demanding.

Our buyer’s club immediately hit the headlines, on Newsnight and in the Guardian. And within a week, as Orkambi was being debated in parliament, parliamentarian after parliamentarian castigated Vertex for their behaviour and called on the government to heed our calls for action. Indeed, when she rose to respond the Health Minister, Seema Kennedy, committed the government to immediately exploring options to bypass Vertex’s patent monopoly to get the affordable generic version to NHS patients. Here are some of their quotes:

“…the Government need to step in and help patients. The most effective way they can do that is by pursuing a Crown use licence for Orkambi.”

- Kelly McCarthy MP, Labour

What assessment has the Minister made of the case for Crown use licensing, where the Government take control of the situation and ensure that these drugs are provided? [...] It is a disgrace that families have to buy [these drugs] from Argentina.”

- Ian Austin MP, Independent

“[Vertex] continues to put patients’ lives at risk as it seeks to extract the highest possible price from our NHS. When Alexander Fleming created penicillin, he had it publicly patented so that it was accessible to all, and it became a revolution in modern medicine. Should we not be legislating for pharmaceutical companies to do something similar and put patients, not profits, at the centre of their development?”

- Clive Lewis MP, Labour

“Vertex has been offered the most generous settlement in the entire history of the NHS. Is it not time that the company now took the brave decision to accept a very generous deal?”

- Ranil Jayawardena MP, Conservative

“It is frankly disgraceful that we live in a world so driven by profit-making and the market that such companies can hold lives to ransom in that way.”

- Laura Smith MP, Labour

This announcement marks a dramatic development for a government which has, until now, focused solely on trying to persuade Vertex to do a deal. Faced with their continued intransigence the government is now looking elsewhere for a solution. It will give Vertex lots to think about, and is an incredible leap forward in the campaign for Orkambi to be available on the NHS at a fair price.

We must now hold the government to their word. Over 100 parents, carers and cystic fibrosis patients have written to the government asking to meet soon to ensure access to Orkambi or the generic alternative. We won’t stop until everyone who needs Orkambi, gets it - and the developments over the last week have moved us one big step closer.

To read about and sign up to the Orkambi buyer’s club, visit the website www.cfbuyersclub.org

Elizabeth Baines