Mum calls ‘cash cold
A MOTHER whose daughter is being kept alive by “wonder drug” Orkambi has written to the Health Secretary on the 18th birthday that her child was not expected to see.
Jessica Cranfield-Smith reaches the landmark today and since 2017 has received the cystic fibrosis drug free on “compassionate grounds” from US drugs giant Vertex.
Although thankful for the drug saving her daughter’s life, Sharon Cranfield, 53, said Jessica sadly received it too late to stop irreversible lung damage.
Now Sharon is determined that Vertex and NHS England should strike a deal for cystic fibrosis sufferers to have access to all its current and future CF drugs.
And in an open letter to Health Secretary Matt Hancock, Sharon, of Tadworth, Surrey, has begged him to save more children like Jessica.
Sharon has shared the moving letter, pictured opposite, with the Daily Express.
In it, she urges Mr Hancock to secure the deal with Vertex immediately so Jessica can have access to the new triple combination therapy that is due next year.
Rebuffed
British parents have been pleading with Vertex to end their “cash cold war” over a rebuffed £500million NHS offer for its portfolio of CF drugs.
Orkambi “stops the clock” in the deterioration of many CF patients. In the three years that it has been unavailable on the NHS, it is feared up to 220 sufferers have died.
Last week we reported how the US company had finally agreed to meet Mr Hancock to end the stalemate.
The frustrating impasse on Orkambi had also led to the Health and Social Care Committee launching an inquiry to sit on March 7.
Vertex recently reached an agreement for its drugs in Scotland and already supplies Orkambi to nine countries.
For any deal to be struck with NHS England, Vertex must re-engage with the National Institute for Health and Care Excellence, which appraises and approves NHS drugs.
NHS England’s £108million-a-year Vertex offer was for Orkambi, Kalydeco, Symdeko and a “triple therapy” super-drug that is under development.
Triple therapy could potentially help about 7,000 CF patients. NHS England has a rolling £55million-ayear deal with Vertex for Kalydeco, which tackles a specific mutation affecting just 460 CF sufferers.
That means NHS England wanted – for an increase of just £53million – to get treatment for just over 7,000 more CF patients. Vertex vice-president Rebecca Hunt told the Daily Express last week the company “cannot accept that”. Last night Sharon said: “I hope