Cystic Fibrosis scandal: Matt Hancock agrees to meet sufferer in hospital

Posted on May 4 2019 - 10:03pm by admin

Vertex have met NHS England and drugs appraisers NICE at least twice since March for Orkambi negotiations – but the treatment is still unavailable.

​Last week Carlie was laid low with a serious infection and hospitalised for intravenous antibiotics, fed by a tube inserted straight into her vein.​

On Saturday she begged Mr Hancock to visit her at King’s College Hospital, London, and explain why CF patients are forced to wait for life-saving drugs.​

​Now her plea has been heard and last night Mr Hancock agreed to meet the married mother-of-one “as soon as possible”.​ ​

Delighted Carlie, of Sittingbourne, Kent, said: “It has been a day of mixed emotions for me.​

​“I started the day so happy that I was being allowed to finish my IVs at home with my family.​

​“But within hours doctors stood at the end of my bed explaining how they’d found a new multi-resistant bug in my test results and my heart sank. ​

​“But now to receive a telephone call to say Matt Hancock had accepted my invitation to meet was a glimmer of hope. ​

​“The CF community have been listened to and finally I’m given the opportunity to speak on behalf of over 10,000 people and their families. ​I’m excited to meet Matt and grateful for his time and hope I can show him the daily struggle you face as a CF patient.​

​“We CF sufferers don’t have the time to wait for these secret talks to keep happening without a resolution, time is so precious.​

​“The quicker people get these Vertex drugs, the less damage is done to their lungs and the rest of their bodies.”​

Carlie, who works in NHS recruitment, now plans to urge Mr Hancock to keep pushing through an NHS deal for Orkambi.​

The Daily Express has long been crusading for NHS England to strike a deal with Vertex for their pipeline of CF life-saving drugs, including Orkambi.​

When Vertex refused the NHS’s £500million offer last July, the US firm also quit the NICE process that approves drugs for use.​

​Thanks to our ongoing campaign for an NHS and NICE deal with Vertex, all three sides returned to the negotiating table for their first talks in eight months.

Carlie added: ​“It hasn’t been great for me and I’m feeling a bit downtrodden, to be honest. I’ve coughed so much I’ve cracked a rib.​

​“I would love Matt Hancock to visit me to give me some answers face-to-face.​ I will ask King’s College Hospital staff to make him a cup of tea and I can show him how the IVs go straight into my vein.​ I would also say to him, ‘Matt, if anything happens to me when I was still waiting for Orkambi, I want you to go to my son and apologise to him and say sorry’.”

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