NICE to re-think blindness drugs decision
pharmafile | August 9, 2007 | News story | Sales and Marketing | AMD, Lucentis, Macugen, NICE
NICE will delay issuing final guidance on two blindness drugs after an unprecedented patient outcry over its decision to block access to them.
Guidance on Novartis’ Lucentis and Pfizer’s Macugen will now not be produced until next year, but patient groups remain concerned the delay will prevent sufferers of age-related macular degeneration receiving treatment.
NICE’s original guidance recommended Lucentis for use in just 20% of patients, but not until both eyes are affected and then only in the healthier one. Macugen was blocked altogether.
The RNIB’s head of campaigns Steve Winyard said: “By going back to the drawing board to issue a second set of draft guidelines, NICE are in effect admitting that they got their preliminary recommendations badly wrong.
“This incompetence means that every day they reconsider and delay, 50 people could lose their sight.”
Until final guidance is produced, local prescribing arrangements will be followed, but NICE said there was no ban on prescribing drugs it had not assessed.
Nevertheless, the RNIB and Macular Disease Society have launched a patient advocacy service – Action for AMD Treatments – to help patients gain access to Lucentis and Macugen.
Both groups had asked patients and their carers to write to NICE’s chief executive Andrew Dillon and the RNIB estimates that NICE received an unprecedented 20,000 responses opposed to its preliminary recommendations.
NICE will now carry out further economic modelling for the appraisal, which is expected to lead to a second preliminary appraisal being produced. But the additional workload required to produce this and then the final appraisal means NICE’s final guidance won’t be published until after December.
Campaigners say if NICE’s original recommendations are followed it would condemn to blindness the 20,000 people that each year develop age-related macular degeneration or wet AMD.
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