The UK’s drug cost-effectiveness watchdog has announced plans to improve access to treatments “which may extend life, at the end of life”.

The National Institute for Health and Clinical Excellence has issued new guidelines regarding the appraisal of life-extending drugs for certain people facing up to short life-expectancy. In essence, the agency has decided to extend the current threshold at which treatment is deemed cost-effective can now be extended for patients with rare terminal illnesses, including certain types of cancer.

Specifically, a drug will need to show that it extends survival by at least three months for patients who have fewer than 24 months to live. Also, to a qualify for an extension, drugmakers need to prove that no alternative treatment with comparable benefits is available through the National Health Service to their therapy, which has to be licensed or otherwise indicated, for small patient populations, ie less than 7,000 patients.

When these conditions are met, NICE’s appraisal committee will consider the impact of giving greater weight to QALYs (quality-adjusted life years) achieved in the later stages of terminal diseases. The £30,000 QALY threshold has not changed since NICE was established ten years ago.

Andrew Dillon, NICE chief executive, noted that that the Institute is “conscious of its responsibility to support the development of novel treatments for smaller patient groups that provide innovative benefits over and above existing NHS care”.

The guidance has gone down well with charities and pressure groups and the Rarer Cancers Forum issued a statement saying that “this is a decision which could benefit thousands of patients”. However it also notes that “there are many treatments which can never be assessed by NICE due to the extreme rarity of the cancers they can treat. Patients with these cancers will still be forced into the inconsistent and demeaning exceptional case processes unless action is taken”.

The RCF concludes by saying that “o address this inequality, the Government needs to explain how these patients can receive the life sustaining treatments they need without relying on top-ups”.