[susieParticipant]

Hi All

Can anyone tell me why it appears none of the drugs available for myeloma come onto the generic market. I know drug companies protect their drugs for many years, but it seems to me that absolutely none become generic, therefore cheaper and therefore more likely to be approved by NICE.

I do feel NICE is apt to penalise myeloma patients by limiting the availability of drugs that work well to control myeloma, even though I am aware how expensive they are.

Just my thoughts folks

Best Wishes

susie

[louishenryParticipant]

I’m trying very hard not to get on my soapbox and rant about this. The drugs market is an unholy mess. Yes, drugs are very expensive to develop, no the drug companies should not be charging tens of thousands of pounds years after they have covered their costs. Nice is doing an excellent job negotiating the best deals possible but that is no comfort if you’re the patient who needs the drug NOW not in twelve months time.

[iangParticipant]

Patents give drug developers 20 years protection with the possibility of another 5 years in some countries if a developer meets certain requirements.

NICE try to balance cost against benefit but I’m not convinced they’ve got it right in the case of pomalidomide. It is very expensive but there seem to be plenty of examples of people being treated successfully for very long periods (and it’s available in Scotland). NICE are still reviewing it, so let’s hope they decide next year to reverse their decision to ‘not recommend’ it.

[annlynnParticipant]

wel here we go again 2nd line treatment started velcalade dex and chemo the steriods are the worse the ups the downs the tears but got to be done moving house at the same time would like to run c away till next week keep teling myself this will get me back in remmision soon so its worth it good luck to all on treatment and all starting new. xxannlynne

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