Submitted on Monday 13th March 2017
Published on Wednesday 22nd March 2017
Current status: Closed
Closed: Tuesday 2nd May 2017
Signatures: 7
Where a treatment exists, provide fair and fast access for rare disease patients
People with rare diseases wait on average over 2 years for potentially life-changing treatments. Less than half of treatments approved in the last 15 years are funded by NHS England vs. 93% in Germany and 81% in France. If a treatment exists, access should be the same as for more common conditions.
The Department of Health, NICE and NHS England should work together with patient groups, clinical experts, and the Pharmaceutical Industry to establish a new and fair process for appraisal of rare disease medicines.
Data from the Report:
Equity and Access: Making the UK a Rare Disease Leader. (2017) Initiated and funded by Shire Pharmaceuticals and developed in collaboration with an external steering group
This petition, and the Equity and Access Report, were initiated and funded by Shire.
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