Sunday, 29 November 2015

PoliticalSpeak: are you an early adopter?

Please adopt our policy and pledge your support. #PoliticalSpeak #BrainHealth #MSBlog

“I have just got back from the 23rd European Charcot Meeting, in Baveno, Italy. I was invited to present our ‘Brain Health – Time matters in MS’ policy document. My presentation was a bit rushed as I was expecting to have 30 minutes, but was told to cut it down to 15 minutes just before I presented. As promised, my slides are below for you to see and/or download. I received a lot of positive feedback about my presentation and the policy document. One neurologist from Canada will be using the policy document next week as part of a lobby in Canada to get more effective 2nd-line treatments available earlier for people with MS. A Dutch neurologist asked why the Netherlands were not more involved with this initiative; they can be all they need to do is sign-up and pledge their support. A Swiss neuroradiologist volunteered to help with the imaging, and MRI monitoring component, of the policy document. All these anecdotes are good news for me as it indicates that people are engaging with the initiative. I sincerely hope 'Brain Health in MS' as treatment concept evolves over the next 12-24 months into something much bigger. Our vision for the document is for it become a real change agent so that we actually ‘create a better future for people with MS and their families’.”



“If you haven’t pledged your support for the policies please do via our Brain Health website.”

CoI: multiple

5 comments:

  1. There was a post on this topic earlier and I understand why it was removed as it broke house rules by naming someone. It did make me think of the problem of providing anti CD20 therapy whilst we are waiting for Ocrelizumab and a potential work around for the off-label problem.

    This idea's working title is called 'MD's Rituxanary in the sun'.

    Last winter during our trip down to Florida we ran into a family from Liverpool in the elevator, the father heard my accent and asked ‘are you over here for Chemo too?' I was a little taken aback; but I found out that they were over in Florida for treatment for one of their children that was not available in the UK. If we cannot move the politicians (figuratively), could we move the patients (physically)? I recall in an earlier post Prof. G did ask me not to mention Rituximab until after the Ocrelizumab results were released; perhaps I could raise this point again?

    From my conversation in the elevator I learnt that the costs for the trip and treatment were paid for by a charity back in the UK. Could we implement a similar solution? I know that this is not an easy solution but a few months ago it was impossible.

    Am thinking patients fly over to Florida, flights are relatively cheap, negotiate a group price for drugs with the suppliers; this is easier to do in the US. I know that this is not a slam dunk idea but any thoughts?

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  2. Riley Lewis said
    Thank you for this. My girlfriend will be seeing her neurologist for the first time this week (Dr. X, SK Canada...who I believe went to the same school as you) and both he and my girlfriend support early, aggressive treatment. The problem is that the government here will not allow such treatment until advanced progression of the disease. She wants to use Alemtuzumab immediately, but has been told she will need to fail 2 earlier treatments (rebif, capaxone, etc) first, and have multiple relapses before they will allow it. It's incredibly frustrating! They wouldn't make a cancer patient use tylenol before attempting radiation therapy or chemo! on PoliticalSpeak: are you an early adopter?

    MD says PLEASE DO NOT USE PEOPLES NAMES

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    Replies
    1. Sorry about that. Can that be added to the blog posting rules? Best to warn in advance so others don't make the same mistake!

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  3. Prof G,

    Thanks for the post. What struck me was that this was the 23rd meeting ie almost a quarter of a century. I'm guessing a lot has happened since the early 90s - treatments became available which led to more effective treatments. Also the treat highly effectively early approach is starting to catch on. I'm not so sure that we have made that many advances in understanding the trigger for the disease or the mechanisms behind progression. I wonder if you will attend the 50th ECF meeting? Personally, i'd hope that in 10 years the need for such events will have diminished.

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  4. 'Vitamin D and cognition in older adults": updated international recommendations.

    Don't these recommendations apply to patients with MS as well?


    J Intern Med. 2015 Jan;277(1):45-57. doi: 10.1111/joim.12279. Epub 2014 Jul 19.
    'Vitamin D and cognition in older adults': updated international recommendations.
    Annweiler C1, Dursun E, Féron F, Gezen-Ak D, Kalueff AV, Littlejohns T, Llewellyn DJ, Millet P, Scott T, Tucker KL, Yilmazer S, Beauchet O.
    Author information
    Abstract
    BACKGROUND:
    Hypovitaminosis D, a condition that is highly prevalent in older adults aged 65 years and above, is associated with brain changes and dementia. Given the rapidly accumulating and complex contribution of the literature in the field of vitamin D and cognition, clear guidance is needed for researchers and clinicians.
    METHODS:
    International experts met at an invitational summit on 'Vitamin D and Cognition in Older Adults'. Based on previous reports and expert opinion, the task force focused on key questions relating to the role of vitamin D in Alzheimer's disease and related disorders. Each question was discussed and voted using a Delphi-like approach.
    RESULTS:
    The experts reached an agreement that hypovitaminosis D increases the risk of cognitive decline and dementia in older adults and may alter the clinical presentation as a consequence of related comorbidities; however, at present, vitamin D level should not be used as a diagnostic or prognostic biomarker of Alzheimer's disease due to lack of specificity and insufficient evidence. This population should be screened for hypovitaminosis D because of its high prevalence and should receive supplementation, if necessary; but this advice was not specific to cognition. During the debate, the possibility of 'critical periods' during which vitamin D may have its greatest impact on the brain was addressed; whether hypovitaminosis D influences cognition actively through deleterious effects and/or passively by loss of neuroprotection was also considered.
    CONCLUSIONS:
    The international task force agreed on five overarching principles related to vitamin D and cognition in older adults. Several areas of uncertainty remain, and it will be necessary to revise the proposed recommendations as new findings become available.
    © 2014 The Association for the Publication of the Journal of Internal Medicine.
    KEYWORDS:
    Alzheimer's disease; brain; cognition; neuroendocrinology; older adults; vitamin D
    PMID: 24995480 [PubMed - indexed for MEDLINE]

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