Boy, 8, appeals for drug firm to cut prices so he can ‘feel better’
AN EIGHT-YEAR-OLD boy with cystic fibrosis has urged a pharmaceutical company chief to lower the price of a drug it makes so it can be made available on the NHS and help him “feel much better”.
Orkambi received its European licence exactly 1,000 days ago yesterday, but the National Institute of Care and Excellence (Nice) has not recommended it for use on grounds of cost-effectiveness.
Luis Walker and hundreds of other children were expected to write to Vertex Pharmaceuticals in a bid to bring a resolution to negotiations over the cost of the drug.
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.”
Orkambi was approved by the European Medicines Agency on November 19 2015 but an agreement on cost has not yet been reached with the NHS.
Last month new Health Secretary Matt Hancock urged Vertex to break the “impasse”, telling the House of Commons that NHS England had made a “very generous final offer” to the company.
Mother Christina Walker, from Horam, East Sussex, said her son Luis had come up with the idea to appeal to the drug company directly. To be honest, it came out of nowhere because we weren’t even talking about it,” she said.
“But he just said to me, ‘Mummy, if the lady who sells Orkambi had a son with cystic fibrosis she’d understand you know’.”
The 46-year-old added: “It’s a really simple message, please lower the price so the NHS can afford it.”
Luis was among hundreds of people who wrote to the Prime Minister in May to ask her to intervene and help make the drug available for patients.
Ms Walker said that since then he has lost 13 per cent lung function, but doctors believe Orkambi would help slow further decline.
A Department of Health and Social Care spokesman said: “Nice has ruled that the current price offered by the manufacturer of Orkambi is unsustainable and we are calling for a speedy solution to be found between NHS England and Vertex.”