Submitted on Wednesday 29th March 2017
Published on Wednesday 5th April 2017
Current status: Closed
Closed: Tuesday 2nd May 2017
Signatures: 22
Stop decision to deny access to new medicines for those with ultra-rare diseases
NICE and NHS England’s decision to deny access to new medicines from 1 April 2017 for those suffering from ultra-rare diseases, is about to change the lives of thousands of vulnerable, ill people all over England. Medical treatments will be denied, thus condemning those affected to an early death.
http://www.mpssociety.org.uk/2017/03/28/press-release-nice-nhs-englands-decision-deny-access-new-medicines-no-april-fools-joke/
This is specific to MPS and related diseases, but there are many other ultra-rare diseases within England which also be affected, this petition is to cover all of these diseases. This petition is not to condemn the whole proposal made by NICE and NHS, but to amend decisions within it, mainly the access to new medicines.
More information can be found via the NICE website
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