The UK’s National Institute for Health and Clinical Excellence (NICE) has become embroiled in a row over the bone marrow cancer drug Velcade® (bortezomib).
In June, NICE issued draft guidance reversing an earlier rejection and recommending a “risk-sharing scheme” between the NHS and manufacturer Janssen-Cilag to fund Velcade (bortezomib) for multiple myeloma sufferers in England and Wales who respond well to it.
But the charities Myeloma UK, Cancerbackup and Leukaemia CARE have accused the body of “shifting the goalposts” and restricting the drug further.
They claim the draft guidance approved Velcade “in people who have received at least one prior therapy”.
However, they argue the final guidance now reads “in people who are at first relapse having received one prior therapy”.
A Cancerbackup spokesman said: “We are very disappointed by the final decision, after what was a very promising initial decision for patients.
“The initial decision indicated that patients would be offered the opportunity to have Velcade whenever they relapsed, but this has now been withdrawn and people will only be able to access it on the NHS when they relapse for the first time.”
But a spokeswoman for NICE said the organisation regretted that the original draft guidance had been interpreted in a way which some patients may now consider will disadvantage them.
“The first draft is just that, a draft. It is intended for consultation with stakeholders, and we make it clear that recommendations can and do change.”
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