24th March 2010

Better NHS access to drugs and treatment for very rare conditions

On 19 March, Health Minister Mike O’Brien announced that patients with very rare conditions will be given access to drugs and services not previously available on the NHS.

The proposals follow two consultations and mean that a small number of drugs and treatments for very rare conditions, that are not yet appropriate for the National Institute for Health and Clinical Excellence (NICE) appraisal process, can now be considered for use in the NHS. This will help give patients with very rare and extremely rare conditions access to a wider range of drugs and services.

Access to these drugs and services will be increased through two initiatives that are supported by patient groups, NICE, the NHS and industry. These are:

  • the creation of a three-year £25m Innovation Pass pilot as outlined in the Office for Life Sciences (OLS) Blueprint – to help patients with rarer diseases access highly innovative new drugs which are not yet appraised by NICE. A Government notice of procurement will be published in the Official Journal of the European Union formally inviting expressions of interest for the pilot; and
  • setting up a new expert advisory group – to strengthen the existing arrangements for commissioning services nationally for extremely rare conditions and to ensure that the system is more transparent and robust.

Health Minister Mike O’Brien said:

“I am extremely pleased to see support for proposals that will make a real difference to patients with very rare and extremely rare conditions by helping improve access to drugs and services not previously available to them.

“Exciting, innovative new drugs which will be included in the Innovation Pass pilot scheme will mean that with the help of NICE, the small number of patients suffering from rarer diseases will be able to get access to a wider range of drugs and contribute to the collection of important data on their impact.

“The new expert advisory group will ensure that the assessment of new treatment services for extremely rare conditions is robust and fair. People across England can be assured that there is a transparent system in place for deciding which specialised services are commissioned nationally.”

Commenting on the Innovation Pass, Sir Andrew Dillon, NICE Chief Executive said:

“We are happy to play our part in these new arrangements, which complement NICE’s work in evaluating new treatments for use in the NHS.”

The vast majority of new drugs and technologies will continue to go through NICE’s existing processes.

Notes to editors
1. The two consultation responses published today can be found at:

2. Drugs included on the Innovation Pass pilot scheme will be licensed and NICE will play a key role in developing and applying the drug eligibility criteria for the Innovation Pass. All drugs included on the pilot will be submitted for NICE appraisal at the end of the three years.

3. The new expert advisory group will have a wide range of expertise to take into account both clinical and commissioning issues when assessing all treatments to be funded nationally. It will replace the National Commissioning Group in its current form, incorporating the strengthened system.

4. The Office for Life Sciences (OLS) Blueprint, published in July 2009, announcing a package of measures to help maintain a competitive life science sector in the UK. One of these recommendations – point 2.5 – was for the creation of an “Innovation Pass”. The Blueprint can be found here

5. For more information about how the NICE appraisal process works, please the NICE website

6. For more details please contact the Department of Health Press Office on 020 7210 5221.

(Source – News Distribution Service for Government and the Public Sector)

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