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Drug row ‘having enormous impact’ on cystic fibrosis patients | UK News

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Campaigners have warned that a row between the government and a US drug supplier could affect the life expectancy of thousands of young cystic fibrosis patients.

A drug called Orkambi could help many of the 10,000 Britons living with the life-shortening condition – but it’s not yet available in the UK because the NHS says it costs too much.

Manufactured by the US pharmaceutical company Vertex, Orkambi is the first medication to target the cause of cystic fibrosis, not just to relieve the symptoms.

Its listed price is £104,000 per patient per year and it’s already available in 10 countries including Ireland, Germany and the US.

In July, the NHS offered Vertex £500m over five years to access Orkambi and other cystic fibrosis drugs – it’s largest offer in the history of the NHS.

But Vertex said it wasn’t enough and negotiations stalled.

This week following a seven-month stalemate, Health Secretary Matt Hancock and the pharmaceutical giant have agreed to resume talks.

But mother Claire Wilson, whose four-year-old son Rufus has cystic fibrosis, told Sky News that the wait was “heartbreaking” and “frustrating”.

“You go through periods of feeling very angry. It’s my little boy’s life we’re talking about. If we got it [Orkambi] now we could preserve his lungs, he could lead a more normal life, it would mean less treatment, less hospital stays.

“We could tell him when he’s older that he’ll have a longer life expectancy than he would have had.”

Orkambi is manufactured by the Pharmaceutical company Vertex
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Orkambi’s listed price is £104,000 per patient per year

Campaigners say that more than 200 people in the UK have died in the three years the drug hasn’t been available in the UK.

“What is becoming an increasingly ugly spat is having an enormous impact on lives of those with CF and their families’ lives,” said Nick Medhurst, from the Cystic Fibrosis Trust. “No one wants this to be played out in such a public way.”

Some campaigners are calling on the government to use the 1977 Patents Act which would allow the state to override a drug’s patent in the national interest. This would allow the government to manufacture replicas of Orkambi. One expert estimated such drugs could be made for £5,000 per patient per year.

Vertex has invested over $11.3bn in drug discovery research and development since 2000. The company says it invests 70% of its profits into research.

In response to questions from Sky News, Rebecca Hunt, the vice-president of corporate affairs international, Vertex Pharmaceuticals, said: “It is our highest priority to find a path that provides eligible people with CF access to Orkambi.”

She added that the price offered by the NHS “is a small fraction of the prices paid by other countries”.

The Health and Social Care Committee has launched an inquiry into the availability of Orkambi and it will hold a public hearing in March.

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