Mike Wallis is being treated with a new drug called Vorasidenib via an early access scheme at the The Royal Marsden in Sutton.
The National Institute for Clinical Care, known as NICE, is assessing the drug’s clinical and cost effectiveness for NHS use.
Mike tells Jacqui Kerr the implications for patients like him if the drug is declined.
A NICE spokesperson said: “We are, of course, aware of the impact that a decision not to recommend a treatment can have. The views of people who are directly affected by the recommendations we make, as well as their carers and the organisations that represent their interests, are important in the development of our guidance.
“However, we also need to consider the evidence of a treatment’s clinical and cost-effectiveness in our decision-making. Clinical trial evidence shows that vorasidenib increases how long people have before their cancer gets worse compared with a placebo. But there is not enough evidence to show if vorasidenib extends how long people with the condition live.
“This is not NICE’s final decision on vorasidenib; our draft guidance has been open for public consultation to give the public, charities and other stakeholders a chance to share their views and comments.
“We have also asked the company for additional information, including on key issues such as overall survival and this, together with comments received as part of the public consultation, will be considered by the independent committee at its next meeting, which is due to take place later this month.”
