Letter to the Times – Blood Cancer plea

This topic contains 5 replies, has 4 voices, and was last updated by  dusk 6 years, 6 months ago.

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  • #124830

    davidainsdale
    Participant

    Hi All

    Glad to see that Eric Low and the team at Myeloma UK are fighting our corner with the other blood cancer charities by writing to the Times today and raising concerns about the cancer drug funding.

    Hope it influences the decision makers.

    David S

    #124845

    susie
    Participant

    It is brilliant M UK are fighting our corner. Don’t know what we would do without them. However, I doubt this government will take any notice at all so I won’t hold my breath.

    #124848

    andyg
    Participant

    Hi David.

    Sadly I think the chances of them altering their stance are slim and if they do it will be too late for some.

    I know quite a few MMers on here, Facebook and Twitter who are running out of treatment options and the removal of Pomalidomide has come just when they were hoping to move on to it! I myself have been on Pomalidomide for nearly two years now and it’s kept me stable. I also know others who couldn’t tolerate Pom and had to stop taking it quite quickly. It’s removal from the CDF removes another weapon from the armoury and leaves the prospect of having to use older more harsher treatments and I can’t see the government oops the CDF funding the newer drugs in the pipeline because I expect them to be even more expensive the Pomalidomide and no matter how they dress it up that’s the reason our drugs are being denied us.

    Dex fuelled rant over for now.

    Every day is a gift.

    Andy

     

    #124857

    susie
    Participant

    I find it hard to believe that medical professionals and patient reps (who I understand are on the deciding panel) took Rev & Pom off the list. They are proven drugs with lower side effects than the older CHEAPER drugs. I believe that because they are so effective we would live longer and therefore cost greater amount of money in the long run. To show my point, at the same time a drug that gives pancreatic cancer patients 2 or 3 extra precious months was made available.

    We just have to hope that NICE will, at least put Pom on their list.

    Best wishes to all

    susie

    #124861

    davidainsdale
    Participant

    Hi Susie and all

    I notice that the BBC News website is reporting that the breast cancer drug Kadcyla is back on the list after Roche reportedly cut its price.

    As you say, it all seems to come down to money. What seem odd is that if NHS England takes a specific drug off its list then the drug company presumably gets no revenue from this source once a drug is de-listed, in which case you might think that some ( reduced ) revenue is better than none? Better a bird in the hand than two in the bush.

    Maybe my home economics are too simplistic?

    Hope this helps.

    David S

    #124862

    dusk
    Participant

    There are private parts to the NHS system. The elite with resources, those who have medical insurance e.g. from the workplace or from their own funding who have myeloma will still have access to the drugs NHS patients will be denied.

    From the drug companies perspective the UK alone does not have enough myeloma patients for them to generate huge profit from the NHS, hence high drug prices. Getting approval at European level for the drug enables it to be available across Europe if all governments are willing to fund it nationally.

    The price of these drugs is very variable depending on country as an article in the newspaper highlighted a while back. I think there is a case for setting a price at the EU level with the drug companies so that the cost can be lowered. But now with arguments against staying in the EU emerging… The issue of proper funding for the NHS to meet population needs compounds things.

    Patients may wish to avoid politics, we just want the best treatments to give us life. But how taxation revenue is spent is political unfortunately and ignoring this makes the politicians and those serving them take the actions that we now find untenable.

     

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