NICE is in the Spotlight again. What would you ask them?

The National_Institute_for_Health_and_Care_Excellence (NICE) is the centre that limits your access to high cost drugs…no really it is an Institution that is there to ensure that the Health Service gets value for money and is a place that develops clinical guideline. 

This week we have heard that a combination of Nivolumab an monoclonal antibody that blocks activation of the programmed cell death 1 (PD-1) receptor on activated T cells and or Ipilimumab works to activate the immune system by targeting CTLA-4, a protein receptor that downregulates the immune system has been used to treat melanoma a skin cancer.

In a recent phase 3 study  that some media sites were describing as “spectacular”  was shown to  move the progression free survival time from median of 3 months (95% CI, 2.8 to 3.4) with ipilimumab  and  7months  (95% CI 4.3-9.5)in the nivolumab group and up to to 12 months  (95% confidence interval [CI], 8.9 to 16.7) with combination of nivolumab plus ipilimumab, with 10% adverse effects in the former group and 55% in the latter group.

But now the cost, which is estimated at over £100,000. 

Are NICE going to support this cost for something that supports life for just a few months? I can already guess. They struggle to support MS drugs that may give you many more years of an active life.
With this in mind it moves the focus onto what is the job of NICE.
One of our bloggers heard that Dylan will be appearing on BBC Radio Four (sorry I think that your IP address will stop you listening if you are outside the UK, unless you have a proxy server that allows you to get a UK IP) on wednesday to answer your questions about NICE.
No that is, Sir Andrew Dillon who is the head of NICE. 

He is reported to have said that companies should be sure that all expenses spent on research were necessary in order justify the high prices demanded for new products assessed by health technology assessment (HTA) bodies such as NICE.

“If it really does cost £1.2bn to develop a new drug, the question the pharmaceutical industry must be able to answer is this: are you absolutely confident that it needs to?”
Whilst pharma may have replied “up yours, we’ll charge what we can get away with”….NICE does its best to quell pharma excesses within the UK.

This is your opportunity to ask questions of the NICE guru on air on PM with Eddie Mair. According to our source (Listen to PM with Eddie Mair at about 40min on 1 June 2015 show..There is a comment on how NICE works), it says to send questions to before it airs, which is 17.00 on wednesday. 

So maybe we should write some questions: This can either get stuff off your chest or maybe we will send them in.

How about:

1. You say companies should not charge more than they spend on developing drugs. However, what can NICE do to limit the excessive demands of the regulators (I heard that the FDA were asking one company to do a trial that would cost them $100,000,000). These help drive the costs so sky-high to justify the existence of NICE, whilst  meaning that academic clinicians cannot do their studies well enough or afford the processes to allow the development of cheap repurposed drugs.

2. The NHS/UK PLC can simply not afford expensive drugs and NICE appears to be one instrument to control drug costs. Should local NHS trusts be made to pay all or part of the prescribing costs of expensive NICE approved drugs, as a means of incentivising them not to do so, just as putting budgets in the hands of GPs, limits their willingness to prescribe expensive treatments?

3. Do you think that if people meet the NICE guidelines they should have access to the drugs and if so why are people having to wait so long for the NHS to give them access to such treatments.

4. Should we be funding studies like heamatopoeitic stem cell therapy, which is currently outside pharma control, as an alternative to current expensive disease modifying MS drugs.

5.  Jeremy Hunt says in the Telegraph that he has given the NHS extra cash, how quickly can you spend it?

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  • 'One of our bloggers believes' 'if this blogger is right', sheesh give me strength, all you have to do is go to the radio 4 PM website, click on listen again from yesterday and some 40 mins in it flipping tells you!! I don't understand why you have not checked this and instead make it read like I might suffer from some possibly bizarre aural delusions.

    • As you are anonymous fear not….your reputation is intact unless we are deluded to think that all people who post as anonymous are the same person. However, it seems I am the deluded one to think that you may contribute some suggestions.

      The biggest issue that makes people not engage with the public more is time.

    • Haha, it must be a bit confusing with all the anonymous posting. I do intend to contribute but this will be later today.

  • Surely HSCT is a big subject that should be addressed? Also the length of process involved in getting drugs repurposed let alone new treatments out there?

  • I agree with all your questions and I think they all need asking. On a more selfish level I'd like to know if NICE is looking at extended interval dosing in Tysabri for people who are JC positive.

    Following on from this, is there any research looking at the group of Tysabri users who appear to have rebound symptoms towards the end of the four weekly Tysabri cycle. I'd like to know if this means the Tysabri is still effective and if this possibly represents a lower risk of PML, particularly in JC positive patients.

    • I would think it needs to be Biogen that answers your question about dosing and I have heard MSers talking about the feeling of the need for a new tysabri "fix" as their month comes up as the effects are wearing off. If you are have rebound suggests that there is disease break through

    • Hmm, yes most likely Biogen, I know extended dosing trials have recently taken place and in the US some people with MS are already using extended dosing but this could have something to do with health insurance too. With regard to rebound symptoms, I do get these every month and it is a concern that the Tysabri is not as effective as it should be. But then perhaps it is still somewhat effective and it means a lower risk of PML. Who knows, only time will tell. So I guess I've no other questions beyond what you have listed in your post.

  • I've been to a PCT meeting where a cross-section of people were given the chance to discuss and give input into where the NHS budget should be spent. Chlamydia testing seemed to be more important than hip operations. I thought Chlamydia was avoidable and that failure to help the housebound become mobile and independent costs. I was sitting next to someone in a wheelchair that had fought for Beta interferon for his MS. He kept leaving the meeting to go for a fag break. How does anyone do a job that has to decide where NHS money is spent is beyond me. Human nature is to want the budget to be spent on their specific illness.

  • How about NICE need to recognise/acknowledge/ understand that stress can effect MS. In my case it was mental stress or in other words psychological stress. Five weeks of severe chronic ongoing overwhelming stress mixed with anxiety. Bam massive relapse.

    • If we read through the comments there is an anon who has been writing to NICE about stress etc and they apparently responded.

    • I think neurologists need to be trained to ask questions about the stress and discuss stress. Even for just a few minutes, it wouldn't take up much of the consultation time. To make the patient aware of their stress and to help minimise it.
      Once you are aware of your stresses this may seem obvious but this may not be the case with people experiencing their first or first few relapses or symptoms. They I expect would not know that stress can effect MS. Until they look on the web after getting their possible MS or definite MS diagnosis. Then they may find out about stress and how it can effect MS from forums etc.
      To start off the neurologist could say something like 'stress is not good for anyone…'. There is a big difference between stress from being late for catching a train, daily work stress and ongoing psychological stress.
      Minimising stress can be a challenge but techniques in CBT can help an individual. Such as CBT can help change a persons way of thinking. It's about being aware of your reaction to things that you find stressful.
      It can also cover being assertive and assertiveness techniques. Being assertive includes getting the result you want without offending other people.
      Life events can be stressful such as a relationship break up, house move, bereavement..
      There are various stress reduction techniques ranging from Tai Chi which has been studied and can be as effective on anxiety as some anxiety medications. Also improves balance and depression. MBSR Mindfulness Based Stress Reduction. There is currently a trial by Glasgow University for MSers.
      Meditation can help some but some people may not feel this helps. There's a big difference between a 15 minute meditation and a week long meditation retreat, some if you choose are in silence. I meditate every day but I'm not sure I would be able to get on with a week retreat in silence.
      If the MSer is finding a symptom very stressful or is suffering from stress then it would be an idea to treat the relaspe sooner.

    • I hope that's a joke. MS does kill some people -directly or through complications. Then there is the risk of death from medication, or indeed suicide. And seems to have also taken away my sense of humour as I don't find your comment amusing or if you were being ironic/sardonic that has failed too.

    • I can only imagine this is some scum bag looking for a reaction? Don't give them one the waste of space

    • I disagree, anon 3:38pm. Most MSers life full and productive lives. They go on to have careers, start families and live productively. MS is not terminal.

      If you don't believe me then look at society's opinion of MS compared to AIDS or cancer. These diseases kill and are more prevalent than your illness. MS is largely ignored because it's not really understood or deemed threatening. Re-label it as dementia then I bet you'll get more attention. Call it Young Dementia and you'll boost your sympathies no end.

    • Quite right anon 4.40pm, ignore the pathetic little trolls. Tempting as it is to respond, better not to.

    • You see, even those of us that have MS can't agree. If NICE gave MS 100,000,000, judging by the comments on this blog, MSers would argue how it should be spent.

    • Do you think anon 10.28 that could be because we are not one homogeneous "lump" like the Borg from Star Trek. People with MS are individuals too. Maybe I should get a T-Shirt printed saying that 😉

    • All I'm saying is that NICE deals with all illnesses, but it's not that simple. I'm not making excuses for them, I would give MND more money. I believe we can help ourselves more and ensure money is given to research. That's my opinion, but others will disagree.

    • FYI The comments are half visible and there is no context of what the comments is about you just see a sentence.

  • I would want to know about NICE's role in making available any repurposed drugs for progressive MS found through MS-SMART. Is MS-SMART and the current dearth of medications for progressive MS on NICE's radar?

    • I would think so as Sir jermemy is a the PI on MS SMART and he also helps out NICE.
      Time will tell if MS SMART is smart

  • I'd ask Nice to stop meddling in MS and stick to the one thing they're good at: making those little rectangular coconut biscuits of theirs.

  • So .. err Dr Mouse, any further forward on emailing PM? I've sent an email earlier today but it is very difficult to get results from just one email; on this type of thing, there usually needs to be a few people doing this to build momentum (obviously writing in their own words). No, I don't work for the BBC but I do understand comms and the media 😉



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