Home Forums Melanoma Diagnosis: Stage IV UK patients need our help – Zelboraf rejected

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  • #20396
    pati
    Participant

    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 http://www.factor50.org.uk/

    News report here http://www.telegraph.co.uk/health/healthnews/9331485/Melanoma-drug-too-expensive-for-NHS.html

    The important thing is that our voices can be heard from ANYONE including NON-UK citizens!

    YOUR comments to NICE are invited here:

    http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

    Closing date for comments: 7 July 2012

    #54943
    Beatrice
    Participant

    Hi, although not based in the UK, I did post!

    Let’s all do it!

    Beatrice

    #54944
    pati
    Participant

    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!

    #54945
    Dick_K
    Participant

    Document completed, another voice heard.

    Dick

    #54946
    Anonymous
    Guest

    Plus one here!

    #54947
    pati
    Participant

    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.

    Pati

    #54948
    lak1
    Participant

    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.

    #54949
    pati
    Participant

    Dear all,

    Do not forget to submit your comments on the NICE recommendation to reject Zelboraf for UK patients by July 7th

    Pati

    #54950
    TreeFrog
    Participant

    Done!

    ~Wendy

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