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NICE to assess high cost drugs for rare conditions

8041772-article-pillsNICE will take on the role of assessing very high cost drugs for people who suffer with rare conditions, under the Health and Social Care Act 2012.

Currently, the work is being managed by the Advisory Group for National Specialised Services (AGNSS).

Giving this role to NICE, from April 2013, will create an impartial and robust mechanism for providing independent recommendations on which drugs the NHS Commissioning Board should commission as part of its new role of national commissioner for specialised services.

NICE will develop interim methods for the first few drug assessments and will take forward a consultation exercise in 2013/14 to ensure the process put in place is robust, transparent and consistent.

Health Minister Lord Howe said: “The assessment of very high cost drugs for patients with rare conditions is an important strand of work of AGNSS which needs to be properly secured for the future.

“Our decision to give this work to NICE from April 2013 means that there will be a robust, independent and transparent assessment of these drugs.

“NICE has built up a richly deserved international reputation for its work.

“In taking this work over from AGNSS, NICE will wish to build on the decision-making framework that AGNSS has developed to ensure that the needs of people with rare and very rare conditions are properly considered.”

Professor Sir Michael Rawlins, Chairman of NICE, said: “We are looking forward to taking on this new role from next April.

“As with all our work, we will be consulting widely with patients, carers, clinicians, commissioners and industry to ensure that we develop a robust and transparent process for making decisions about these highly specialised drugs.”

The Commissioning Board will have responsibility for determining the number of centres and levels of funding in commissioning all specialised services including those for people with very rare conditions. Ministers, however, will retain the power to decide which services should be commissioned.

The NHS Commissioning Board Authority is currently working with Professor Arthur, the chair of AGNSS, to consider how best the Commissioning Board might receive high quality clinical advice on highly specialised services when it takes over these responsibilities from 1 April 2013. AGNSS will then formally cease to be a group offering advice to Ministers.

20 July 2012

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Copyright 2014 National Institute for Health and Care Excellence. All rights reserved.