Cystic fibrosis boy, 8, urges firm to lower Orkambi drug price

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Luis Walker wrote to the prime minister asking for her help to make the drug available

An eight-year-old boy with cystic fibrosis has urged a pharmaceutical firm to lower the price of a drug so it can be made available on the NHS.

Luis Walker, from Horam, East Sussex, told Vertex Pharmaceuticals Orkambi would make him “feel much better”.

The National Institute for Health and Care Excellence (Nice) said the price offered by Vertex was unsustainable.

The Department of Health has called for a “speedy solution” to be found between NHS England and the firm.

In a handwritten letter to Rebecca Hunt, Vertex vice-president for corporate affairs, Luis wrote: “You have the medicine that can make me feel much better and not have to spend so much time in hospital please sell it to my country.

“If your son had cystic fibrosis I know you understand and lower the price of Orkambi.”

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His mother, Christina, said: “It’s a really simple message, please lower the price so the NHS can afford it.

“Our children deserve the chance that everyone else has and they actually have it now with this drug.”

Orkambi was approved by the European Medicines Agency in November 2015 but an agreement on cost has not yet been reached with the NHS.

Ms Hunt said Vertex “shared the frustration” of Luis and the thousands of people in England waiting for access to the drug.

“We have spent every one of the thousand days since Orkambi was approved trying to get it to patients who need it; and again urge Simon Stevens (NHS England Chief Executive) to come to the table so patients in England don’t have to wait any longer,” she said.

But last month, Health Secretary Matt Hancock urged Vertex to break the “impasse”, telling the House of Commons NHS England had made a “very generous final offer” to the company.

NHS England said it had proposed a five-year deal which provided the potential for Vertex to secure revenues from the NHS in the region of £500m over the next five years and in excess of £1bn over the next 10 years.

In a letter to the Cystic Fibrosis Trust on 16 July, NHS England National Director John Stewart said he hoped “Vertex chooses to act responsibly and accept this deal and take advantage of the significant flexibilities the NHS is offering”.

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Media captionLuis Walker reads Theresa May’s reply to the Orkambi request

In May, Luis was among hundreds of children suffering from cystic fibrosis who wrote to Prime Minister Theresa May pleading for the life-changing drug.

Ms Walker said that since then he had lost 13% lung function, but doctors believe Orkambi would help slow further decline.

Orkambi has been shown in clinical trials to improve lung function and respiratory symptoms in people with the life-shortening condition, and is thought to be appropriate for about 50% of sufferers.

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