ORKAMBI: Teresa Pearce MP says government "inaction has cost lives"
Following yesterday's article about Orkambi, we asked for Teresa Pearce to comment on NICE's decision to keep the drug off the NHS.
After more than a year since 1,000 letters were sent to Number 10, Orkambi – a drug aimed at improving quality of life for sufferers of cystic fibrosis – remains unavailable on the NHS.
This was due to NICE's concerns around cost-effectiveness and Vertex, the drug's manufacturer, being unable to offer a satisfactory price in negotiations with the government.
The occasion prompted us to ask Ronnie Campbell, MP for Blyth Valley, what he thought about this situation.
He said: "I believe more needs to be done to change how drugs for rare long-term conditions are assessed. The longer patients go without precision drugs, the longer they go on suffering irreversible damage."
Teresa Pearce, MP for Erith and Thamesmead, herself an active campaigner on this issue also spoke to us.
Having also raised a question in PMQs on this topic, Teresa told us:
"A year ago this week, Theresa May told me in prime minister’s questions that she wanted to see a ‘speedy resolution’ to the cystic fibrosis drugs standoff."
"People with cystic fibrosis, including constituents of mine, are still being denied Orkambi and Symkevi, as they watch their health irreversibly decline."
"The Government now needs to recognise that inaction has cost lives. I call on her to join me in Westminster Hall on Monday 10 June to set out exactly how the Government will end this crisis.”