- This topic is empty.
June 25, 2012 at 1:26 pm #20396
Dear patients, advocates, carers,
Following an appraisal earlier in the year NICE have now given their recommendations to reject the use of Vemurafenib for late stage melanoma patients. Gillian Nutall from Factor 50 has been representing patients. UK patients need our support
The important thing is that our voices can be heard from ANYONE including NON-UK citizens!
YOUR comments to NICE are invited here:
Closing date for comments: 7 July 2012June 25, 2012 at 7:39 pm #54943BeatriceParticipant
Hi, although not based in the UK, I did post!
Let’s all do it!
BeatriceJune 26, 2012 at 7:32 am #54944
Indeed, ANYONE can comment – any non-UK means anyone, as patients we are all the same fighting for the same things and access is one of them! Locally we stage IV patients are always small populations which are often too ill to fight, that is why we need to yell our virtual voices so that we can be heard…
Thanks!June 27, 2012 at 5:00 pm #54945Dick_KParticipant
Document completed, another voice heard.
DickJune 27, 2012 at 6:41 pm #54946AnonymousGuest
Plus one here!June 27, 2012 at 8:52 pm #54947 Great, Dick I was hoping you would post…thanks to anyone who feels Zelboraf contributed to their quality of life.
I feel we should do a melanoma video like the l’Oreal one, you know the shampoo in french it is funny their motto (parce que je le vaux bien)…translates to “because I am worth it”! yes we are, every single penny of it.
PatiJune 28, 2012 at 6:36 pm #54948lak1Participant
The strange thing is what is worth the NHS spending money on. A patient with minimal awareness ( a carer once thought she smiled when some light fell on her face) has been kept alive for many years- intensive nursing care feeding etc despite the pateint expressing a wish not to be in this situaion prior to her death all her family wished for withdrawl of the interventions that were keeping her alive – I think for 8 years. A care worker described what might have been a smile. The high court ruled that she should contine to recieve this high cost care. Yet liver resections SIRT even Ipilimumab would not cost what her care costs for 1 year of life.
I f we can afford to extend her life why not BRAF + ve patients. I see no difference in witholding a medication known to be effective and letting a patient die or stopping feeding turning antibiotics assisted breathing for a minimally aware patient.
Except the melanoma patients are painfully aware that their health service and country are abandoning them . There is no real evidence that minimally aware pateint is having any thought or worry at all.July 1, 2012 at 2:42 pm #54949
Do not forget to submit your comments on the NICE recommendation to reject Zelboraf for UK patients by July 7th
PatiJuly 1, 2012 at 5:05 pm #54950TreeFrogParticipant
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.