PoliticalSpeak: vetoing NICE

Should neurologists be allowed to veto NICE?  #MSBlog #PolticalSpeak

“Last week I heard that one UK neurologist has taken a stand and will not prescribe alemtuzumab to his/her patients with MS as alemtuzumab is too expensive. He/She finds the hike in price of alemtuzumab that occurred when Campath was withdrawn from the market and relaunched as Lemtrada unacceptable. We have already discussed this issue on this blog in some detail.”

“There is no debating that Lemtrada is a high cost drug (HCD), but it has already been green-lighted by NICE. The fact is that at the licensed NHS price the NHS considers alemtuzumab to be cost-effective when used according to its current label in adult people with MS who have active relapsing MS defined clinically or on MRI (see NICE guidance below). The cost-effectiveness of alemtuzumab is very close to natalizumab (Tysabri) in the treatment of active MS. I would really like to know if this particular neurologist has taken the same position in relation to natalizumab prescribing? What will their position be on the next generation of DMTs; i.e. daclizumab and ocrelizumab?”

“In essence this neurologist has vetoed NICE. If this story is confirmed it means that postcode prescribing is alive and kicking in the NHS. Only this time is not based on the NHS not funding a particular treatment in a particular area, but by the variation in prescribing of DMTs by neurologists. This is not too dissimilar to the position some neurologists have taken in view of the their perceived risks of alemtuzumab. I know two neurologists who have told me that they won’t be prescribing alemtuzumab as it is too ‘risky’ as a treatment option for their patients. My response to them was a simple question: ‘too risky for whom; you or the patient?’ It should not be the neurologist who is taking the risks, but the patient themselves.”

“In my ECTRIMS ‘Hot Topics’ talk I highlighted slow, or poor, adoption of innovations as an unmet need in the management and treatment of MS. Slow adoption in the UK may explain our position second from the bottom of the treatment league tables in Europe. I have always assumed our slow adoption rate was linked to NICE, and other bureaucratic hurdles, but not neurologists vetoing NICE. In my opinion it is the responsibility of neurologists to manage the patient in front of them to the best of their ability given the current evidence-base and tools at their disposable. It is not up to them to not offer green-lighted DMTs because they consider them too expensive for the NHS. The latter is the job of NICE and not a practicing neurologist. One could argue by not adopting NICE guidance it will actually cost the NHS money.”

“Have your say. Do you think neurologists should be vetoing NICE and deciding risk on the behalf of their patients?

CoI: multiple

23 thoughts on “PoliticalSpeak: vetoing NICE”

    1. MD's comment reminds me of "The House of God" a book I read in my housejob way back in 1988.It portrays some doctors, in particular consultant surgeons, as Gods. The issues raised by this post are as applicable today as they were decades ago.Wikipedia: The House of God is a satirical novel by Samuel Shem (a pseudonym used by psychiatrist Stephen Bergman), published in 1978. The novel follows a group of medical interns at a fictionalized version of Beth Israel Hospital over the course of a year in the early 1970s, focusing on the psychological harm and dehumanization caused by their residency training. The book, described by the New York Times as "raunchy, troubling and hilarious", was viewed as scandalous at the time of its publication, but acquired a cult following and ultimately came to be regarded as a touchstone in the evolving discussion of humanism, ethics, and training in medicine.

  1. Should we asking for a table of prescriptions from the Neurologists.The ones who are risk adverse would be prescribing a disproportionate numbers of CRAB or no drugs. If they are not prescribing Alemtuzumab that would show up and if I wanted it I could ask for another neurologist.

  2. Medical arrogance at its worst. Any chance of naming and shaming these neurologists? Their patients deserve better. I am very very angry. I am going to contact the MS Society and MS Trust to do something about this……. Grr!*(%$$$$£>>>)))(**)

    1. I don't think naming and shaming is the way to get these neurologist to adopt new innovations. It will require education, education, education. This is why Barts-MS are getting into education more and more. In addition, there is no reason why MSers can't educate their neurologists. This is one of the reasons we run this blog.

    2. Prof G, neurologists are by and large arrogant a-holes and don't like it when some young MSer starts conveying up-to-date intel on new drug innovations; you know, stuff they ought to have read about but are too up themselves to have bothered.They then feel undermined and consequently despise the patient. I hate all of my neurologists.

    3. I have had a few neurologists who I severely question their knowledge of MS and neurology in general. My current MS neurologist is very good, so I feel lucky at the moment. I have come to understand that it is very important that I have a deep understanding of MS and am able to self manage my MS as much as possible. This blog is great thank you.

    4. AnonymousMonday, November 02, 2015 8:40:00 a.m. – i have experienced your anger as has my partner with MS. A friend with MS coined it "neuro rage"

  3. I think this is shocking. Surely it is putting a political point- the cost of treatment- before patient care. It sounds like an issue for the ethics committee of the BMA- if there is one.

    1. Doctors are trained to leave their political and religious beliefs outside the consulting room. Unless a patient under the care of these neurologists complain about not being managed properly by their neurologist this cannot be investigated and taken forward. This is why we have published a list of questions for MSers to ask their neurologists about DMTs. http://multiple-sclerosis-research.blogspot.com/2013/12/clinicspeak-questions-to-ask-your.html

    2. my partner has made complaints about some (not all) of the neurologists who have treated her and about the hospital she was treated at. the answer was, each time, thank you so much for your eloquent complaint, we will have a meeting and discuss and be sure to implement change (in year 2012345678910 I'm sure)

  4. While I agree that it's not up to the neuro to fight price gouging, don't you think there should still be room for intuition and experience? Many neuros prefer to wait a couple years after a drug is approved to see what side effects emerge during phase 4, for example. Some respond to ideas they hear through the grapevine from other neurologists. If there is no value in that, let's turn over all the evaluation and treatment recommendations to the robots.

    1. Re: "….don't you think there should still be room for intuition and experience…"Absolutely, I am not saying that at all. I simply questioning the position of this neurologist of not prescribing alemtuzumab because it is too expensive despite being green-lighted by NICE and NHS England. This seems to a matter of principle rather than 'patient need' or in this case 'lack of patient need'. The risk issue is complicated; at the end of the day the prescriber is responsible for managing and monitoring alemtuzumab-treated patients. I can see clinical environments where this may be difficult and the treating neurologist may not want to take on that responsibility.

    2. lemtrada has been used for cancer since the 1990s. the list of side effects of lemtrada listed on cancer websites match all of the effects the lemtrada for ms trials have found. what exactly are these neurologists waiting for before prescribing lemtrada to their patients who are willing to take the risks associated with it – often, it is ignorance not the lack of knowledge that's standing in the way of effective management of MS patients.

  5. Someone needs reminding of their Hippocratic oath. I hope their patients are made aware and seek referral elsewhere.

    1. You can do a lot of harm by under treating MS. It's ok when it isn't you peeing with a catheter. If a patient understands the risk give them the treatment.

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