The National Institute for Health and Care Excellence (NICE) have contacted Ovacome regarding preparation for their appraisal of a PARP inhibitor (a drug that interferes with the cancer's DNA - Olaparib is a PARP inhibitor). At this stage they are asking us for opinions regarding what they need to take into account when they are considering whether to recommend Niraparib availability for NHS treatment.
The name of the appraisal is: Niraparib as maintenance treatment of recurrent, platinum-sensitive ovarian, fallopian tube and peritoneal cancer that has responded to platinum-based chemotherapy.
If any of you have any feedback you would like us to give regarding this, please do leave a message below, or private message me through this forum, or email support@ovacome.org.uk or call 0800 0087054.
In particular, if you took Niraparib as part of a trial and would like to let us know of your experience, that would be really helpful.
Also, anything you think NICE should take into account when considering the quality of life issues around treatment.
Please do let me know if you need any further information on this.
Best wishes
Anna
Support Service Manager
Written by
OvacomeSupport
Partner
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Is this the PARP inhibitor which has also shown good results for non-BRACA gene carriers? If so, I think that needs to be taken into account because there are very few options other than more chemo to keep the cancer at bay for those in that situation. It shouldn't only be used as a drug for BRACA carriers.
Thank you for your replies. Yes, this is the PARP inhibitor for both BRCA and non-BRCA carriers. Our submission will say that we think Niraparib should be given urgent consideration for this reason.
Hi, as a patient who lives in Northern Ireland where we do not have access to Avastin, it would be a huge step forward for women here to have access to Niraparib if it were approved by NICE. This should not be done on a postcode lottery, it should be available to us all within the UK.
I agree the differences across the UK are very frustrating. The Department of Health, Social Services and Public Safety (HPSS) would take the decision in Northern Ireland, but my understanding is they link with NICE to see if the guidance is relevant for Northern Ireland. Therefore, a strong case for NICE could mean a strong case to the HPSS. We certainly hope the drug will be available across UK.
I have been reading reports on the progress of Niraparib in the USA, where I understand approval is being fast tracked. As others have already said, this could be a real alternative maintenance therapy for non-BRCA women for whom other PARPs haven't proved effective. Bring it on, I say! The sooner the better!!
Jay
Was just wondering if this included Scotland? It's not fair that treatment is dependant on where you live.
The Scottish Medicines Consortium (SMC) take decisions regarding access to treatment in Scotland. At the moment its not listed on their website as a forthcoming submission, but they only list a few months ahead.
Olaparib is more widely accessible in Scotland than in England, so hopefully this will bode well for the SMC consideration of Niraparib too.
As a recipient of Olaparib ( I have BRAC2 gene) I would love to see the ladies on here who do not have the BRAC gene being able to access a Parp Inhibitor.
The NICE appraisal for this is still ongoing. The drug company have offered an expanded access programme, whereby consultants would need to apply on behalf of their patients to see if they would be able to access the treatment in advance of a NICE decision. People should talk to their consultants about eligibility and applying for this.
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