Cystic fibrosis breakthrough: Theresa May vows to sign NHS deal for life-saving drugs
THE Prime Minister has told the mother of a baby with cystic fibrosis that she hopes to round off her time in office by signing an NHS deal for life-saving drugs.
In a letter to Zoey Jones, Theresa May told how she was “determined” to make drugs such as Orkambi available in the UK “as soon as possible”.
So far, talks to secure a deal with Vertex, the US pharmaceuticalgiant that makes the drug, have fallen through.
Last month Zoey, 37, and her one-year-old daughter Eve delivered 65 yellow roses to No 10.
Each one had a letter written by a CF sufferer wrapped around it.
The number of flowers was significant, because young CF sufferers who cannot pronounce the condition often mistakenly say: “I have 65 roses.”
In her letter, Mrs May thanked Zoey for the flowers and said it was “an incredibly moving reminder of the importance of this issue”.
She wrote: “I am determined to see this resolved as soon as possible so Orkambi can be used to treat cystic fibrosis.
“I am disappointed this has not been achieved yet and I have urged Vertex to do everything they can, working with NHS England and the National Institute of Health and Care Excellence (NICE), to make these drugs available.
“I am pleased discussions have resumed and hope to see swift progress. Only through resolving this dispute will we be able to provide access to this crucial treatment.”
The Prime Minister added: “I hope that we will be able to help Eve and others like her, suffering from this devastating, life-limiting condition,
as soon as possible.”
Yesterday, Zoey said: “I really appreciate the response from the PM, and I can only hope that she is committed to seeing through a resolution before she departs office.
“However, should this not happen, I implore her to help ensure that the next PM is tasked to follow the progress of this urgently.
“The next person at 10 Downing Street will be the third prime minister since Orkambi was licensed three years ago.”
In May last year, Mrs May told MPs she wanted to see a “speedy resolution” to the drugs deal.
But Vertex refused a £500million offer from the NHS last July and withdrew from all negotiations until the Daily Express helped both parties meet again for talks in March.
Last week, during Prime Minister’s Questions, Mrs May urged Vertex to accept a “revised and improved” NHS deal so CF sufferers can gain access to the medicine they need.
Senior health minister Seema Kennedy also warned the company that Britain will look elsewhere for CF drugs if they will not do a deal.
As frustration grows, a “CF Buyers Club” has been set up to import a generic copy of Orkambi from South America.
The alternative drug – made in Argentina where Vertex has no patents – would cost £23,000 per patient per year, compared to Orkambi’s £104,000 price tag.
After being shown a copy of Mrs May’s letter to Zoey, Vertex last night said: “We are aware of the Prime Minister’s comments on access to our CF medicines and appreciate her interest in the ongoing negotiations between us and NHS England.
“We share her sense of urgency and remain highly committed to the negotiations.”