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’.”