Jim Shannon – 2016 Parliamentary Question to the Department of Health

The below Parliamentary question was asked by Jim Shannon on 2016-10-17.

To ask the Secretary of State for Health, whether his Department has made an estimate of the average time taken by NICE to evaluate new orphan and ultra-orphan therapies in the last three years; and what the average time taken from approval is to access those therapies for patients living with rare and ultra-rare conditions.

Nicola Blackwood

The National Institute for Health and Care Excellence (NICE) has advised that the average time it has taken to evaluate new orphan and ultra-orphan therapies under the highly specialised technologies (HST) programme to date has been 12-14 months. NICE published draft guidance (on average) 6-8 months into the process. NHS England has ensured access to treatments recommended by NICE through the HST programme is available to patients within three months of final guidance. NICE has also advised that its intention is to publish guidance within 4-6 months from marketing authorisation in the future.