A PAUSE to changes to the NICE drug evaluation process

Take action to PAUSE the changes to the drug evaluation process following the NICE and NHS England consultation on Access to Highly Specialised Technologies (HST) for ultra-orphan diseases.

Letter to NICE

On 7 April Christine Lavery wrote to Andrew Dillon, Chief Executive of NICE. Here you can read Christine’s letter and Mr Dillon’s response.

What you can do

Sign the petition

Write to your MP

Request a sample letter

More information

Read the NICE press release

Download the full announcement from NICE and NHS England in the NICE board papers released on 15 March 2017

Read the MPS Society press release

Follow the Twitter moment

Read House of Commons Hansard debate, 28 March 2017, Volume 624, Rare Diseases Strategy

Guide to understanding Quality Adjusted Life Years (QALY)

In the media

pharmaphorum – Charities unite to oppose NICE rare disease rules

The News, Portsmouth – Heartbroken family of terminally-ill Paulsgrove girl say funding change will ‘condemn her to death’