Time for Plan B on Orkambi!

Parents of children in desperate fight for life changing cystic fibrosis drug

Parents campaigning for cystic fibrosis (CF) drug Orkambi have written to the government demanding they move to 'Plan B' after three years of negotiations with the manufacturer has resulted in a failure to secure an affordable price for the NHS.

Orkambi (lumacaftor-ivacaftor) can have a transformative effect on the health of CF patients, particularly children, improving lung function, reducing infections and cutting the need for hospital visits. But the company selling the drug, Vertex Pharmaceuticals, has refused to drop their price to a level the NHS can afford. The UK list price of Orkambi is £104,000 per patient per year and needs to be taken every day for life.

The parents, working with access to medicines campaign group Just Treatment, are now calling on the government to use their legal power to suspend Vertex’s monopoly so a generic version of the medicine can be bought by the NHS. Just Treatment say the generic price could be less than £5000 per patient per year - nearly £100,000 less than Vertex’s price.  According to their calculations this would allow all patients in the UK to access the medicines and save the NHS nearly £4 billion over the next ten years.

Read the letter to the Prime Minister and Health Secretary
Read the technical submission explaining the detail

Christina Walker, whose eight year old son Luis needs Orkambi is calling for the government to act:

“I see Luis struggling for breath every day. I help him with his nebulisers and physio, I take him to regular hospital appointments, give him all his medicines, but nothing I do can affect the progression of his disease. It is heartbreaking to know that Luis will get more and more poorly as time goes on. Meanwhile there is a drug that could help him but he can’t have it because Vertex’s desire to make excessive profits means they are holding out for the highest possible price from the NHS.

"Young people with cystic fibrosis are dying without access in the UK every month. The government has to stop sitting on its hands and saying there’s nothing they can do. With lives on the line it must use all its powers to get access to Orkambi. Efforts to reach a deal with Vertex have failed. We’re calling on Theresa May and Matt Hancock to take action now. Do whatever it takes to let Luis breathe, let all children with CF breathe. It’s time for Plan B on Orkambi.”

The government has the power, under the Patents Act, to issue what is known as a Crown use licence allowing the NHS to buy a generic, identical but much lower priced, version of a medicine even if it is protected by a patent-backed monopoly. The campaigners say this ‘Plan B’ should be implemented by the government.

Diarmaid McDonald of Just Treatment said:

“It is outrageous that the lives of children are being held to ransom by Vertex. We have laws to protect public health so we can stop companies acting in this way. The NHS has bought medicines through Crown use licences in the past, we should be ready to do so again. The government should move immediately to protect the lives of UK CF patients from Vertex’s profiteering by implementing Plan B on Orkambi."

The potential price of generic Orkambi (£5000 per patient per year) was calculated with the help of University of Liverpool academic, Dr Andrew Hill. He added:

“We have seen time and again that extremely expensive medicines like Orkambi are actually very cheap to manufacture. Our studies have shown that the mark-up on many medicines is far higher than what is needed to turn a profit, nor are those very large margins justified by R&D costs. Orkambi could be sold profitably for less than £5000, making Vertex’s price of £104,000 truly shocking. When patients are dying without access to a treatment like this because of excessive pricing there is a moral obligation to act. The government should move to secure a supply of fairly priced generic Orkambi for the NHS.”

For more please contact:
Diarmaid McDonald / Just Treatment / diarmaid@justtreatment.org / 07894455781

Kevin Smith / kevin@neweconomyorganisers.org / 07926222879

Diarmaid McDonald