Campaign – Iris Robinson vindicated!

Just to be clear: “Eyesight of thousands to be saved after NICE approves drug,” NICE rulings applying to Northern Ireland as well as England and Wales, but not to Scotland ( so therefore not UK wide as I posted earlier, although knowing better and have now corrected).

The ruling applies to England, Wales and Northern Ireland – the drug is already approved in Scotland.

In Wales and Northern Ireland extra funding was promised to pay for all suitable patients to receive the drug.

Let’s give Iris Robinson a pat on the back for a change for running at least one decent campaign.

February 2007
Mrs. Iris Robinson (Strangford) (DUP): What is the Secretary of State doing to ensure that people have the same opportunity to receive treatment for macular degeneration right across the country? In particular, Northern Ireland seems to be the last part of the United Kingdom to receive access to drugs, while others on the mainland benefit from them based on NICE guidelines.

Ms Hewitt (then Health Secretary) : Health is a devolved matter. At the moment, I understand that the health boards in Northern Ireland are not funding either Macugen or Lucentis. However, I am sure that they will want to take account of the NICE guidance, as soon as it becomes available.

In NI, the result was old news apparently – the news broke there as long ago as June. That makes a change.

I hope the meetings sent well. It would be interesting to hear what happened next. Perhaps the Macular Disease Society locally or the RNIB could tell us?

  • Female

    I love Iris, I want to give her a kiss

  • billie-Joe Remarkable

    Nice one, Iris. Now to incinerate those sodomites!

  • esmereldavillalobos

    Brian

    NICE is not UK wide – Scotland has it’s own body for recommendations, SIGN (Scottish Intercollegiate Guidlines Network).

  • esmereldavillalobos

    Just to clarify, NICE has responsibility for recommending interventional therapies (surgery, radiation etc) UK wide. Treatment guides in Scotland are produced by SIGN, not NICE but the decision to fund the drug in Scotland was taken by the Scottish Medicines Consortium (SMC) on behalf of NHS Scotland. Phew!

  • Brian Walker

    Esmereldavillalobos, you say ” NICE is not UK wide – Scotland has it’s own body for recommendations, SIGN (Scottish Intercollegiate Guidelines Network).”
    Whoops! You’re absolutely right. It’s an important part of the story. Many thanks, will correct.

  • fair_deal
  • Brian Walker

    ok, ok guys.. got you on Nice in spades…Any reports locally of Lucentis and Macugen making a difference? Clinically obsessed (you know how I mean it) Sluggerites please reply!

  • Big Maggie

    Yes, nice one, Iris.

    Well with a name like that you’d have to have a special affinity with eyesight, wouldn’t you?

  • kate

    You want true life confessions. My mother has this condition. She has had it for several years. She lives in the states (though born and raised in North Wales) and has been getting the injections for a while now. Originally, it was every two months, but now gets lucentis monthly. It has stopped the deterioation in her eyes for the most part (except when she was still going every two months, went on a European tour, and had a fair amount of bleeding in the time period. The degeneration at that time stopped being dry and became wet in her other eye). She is currently trying to source a doctor to give her the treatments in the UK. Her US insurance will pay for it. But at the moment she can’t be away from her eye doctor for more than 30 days because things may go wrong and she may need treatment fairly quickly. So if you are a specialist reading slugger and would like a patient to treat an American health insurance rates, let me know. I like her to visit. But I don’t want her to risk her sight.

  • Maybe its just his eyesight is a bit dodgy
    and a dose of Lucentis wud help Mr Glitter?

    or maybe Iris knows a nice therapist for him?

    The Ulster public have a rite 2 no.

  • Turgon

    Brian,
    There is another aspect to all this. The drugs Lucentis and Macugen arehighly effective but also highly, highly expensive: nothing wrong with that in itself.

    However, the drugs are both vascular endothelial growth factor VEGF inhibitors.

    Now VEGF inhibitors are also used in other conditions such a bowel caner. The drug Avastin is not licensed for macular degeneration. However, doctors had been using it “off licence” in GB and there had been hopes to do a trial showing that it would have been just as effective at a fraction of the cost.

    Here is a link explaining the issue:
    http://news.bbc.co.uk/1/hi/health/7582740.stm

  • esmereldavillalobos

    Turgon

    Given that they are two medications from the same family, they may well have similar effects and the cost implications are compelling. The problem is lack of evidence – no RCTs and therefore no systematic reviews or meta-analysis have been published on Avastin in the treatment of wet AMD.

    Ahh, esme, surely it’s not in the drug company’s interest to do a trial of Avastin when the new drug is twice the price…

    Absolutely and medics use drugs for off-license indications all the time but all it takes is for something to go wrong with Avastin in this condition (thalidomide, anyone? Vioxx?) and the lawyers will have a field day. You can’t extrapolate accurately without any evidence, case series’ are all we have at the moment, give me a good RCT and then we’ve got something to work with.

  • Turgon

    esmereldavillalobos,

    I agree: the problem is that such an RCT would now have to be sponsored by the government since as you correctly say the industry would have little incentive to do an RCT.

    I suspect now there will be even less reason to do the RCT.

    On RCTs though remember that Vioxx had multiple RCTs. Post marketing surveillance picked up that problem, same with thalidomide. Actually with thalidomide it took a long time because (thankfully) only a relatively small minority of children got the terrible birth defects as compared to the vast number of women given the drug.

    As I am sure you know thalidomide was what caused a lot of the drug testing and surveillance we now have. Prior to that many thought that the placenta was a pretty effective barrier to drugs passing into the foetus.

  • cynic

    Now that she’s helped cast out motes from so many eyes could she perhaps cast out one from her own?

  • Brian Walker

    Thank you Kate, Turgon and esme for useful information and discussion. I wouldn’t call yours a “true confession” Kate.

  • C Wolf

    On TalkSPORT they were talking about this and I was wondering what is spent in other areas of the NHS when drugs are refused?
    Or is this just written off as sunk cost because they are employing these people already?
    For example, not giving steroids to chemo patients and allowing people to go blind because they are not prescribed drugs.

  • esmereldavillalobos

    Turgon

    Maybe Thalidomide and Vioxx were not the best examples – you are entirely correct in what you say.

    M’point is that Avastin is licensed for use in metastatic colon cancer, advanced lung cancer and metastatic breast cancer in the States and will have the most evidence for its use in subjects (please excuse the bluntness here) who won’t live very long anyway. Wet AMD is not life limiting though devastating to quality of life. All I’m pointing out is that without any long term evidence of it’s side effect profile in healthy though visually impaired subjects, it’s a risk (how much of a risk, we don’t know) to prescribe it to these people.

    If I had wet AMD and couldn’t get the new stuff, would I take the risk – absolutely! However if I was the prescriber, I’d make damn sure the subject knew it was effectively an experimental therapy and that five years down the line, I wouldn’t know what the effects might be.

  • I like to think of psychic energy as akin to radio waves. Even without the radio on, the air is filled with invisible signals from countless radio stations operating on their various frequencies. All you have to do to receive them is to flick the radio on and tune the dial.