Wednesday, 13 May 2015

The second Pan-European multi-stakeholder colloquium

Political lobbying; is there a place for it in the management of MS. #MSBlog #MSResearch 

"How do you feel about political lobbying? I have been invited to speak at the 2nd Pan-European multi-stakeholder colloquium in Brussels this weekend. You can review the programme, which is online. The focus of the meeting will be on accelerating adoption of innovation for better care. Different working groups are exploring potential solutions to address the following key questions:

1. How to stimulate innovation in MS?
2. The roadmap for adopting innovation in biomarkers in MS?
3. The roadmap for creating access to specialized care & patient activation in MS?
4. Can market authorization (MA) policies and HTA drive access & innovation in MS?
5. Creating affordable care for chronic diseases: is MS different?

The outputs from the meeting will hopefully stimulate debate and commitment from politicians to shape EU health policy in relation to MS. The document below is the output of last year's meeting; a call to action. At this year's meeting I have been asked to speak on optimizing the multi-disciplinary approach. I am basing my talk on my holistic approach to MS. You will see in call 9 below (page 18) they group asks for implementation of specialised care centres. I personally have a problem with this specific call in that the whole movement in the NHS is away from hospital-based care (specialised centres) in favour of MSer or patient focused care in the community. In particular with the adoption of new technologies there are already new ways of doing things to optimise the delivery of healthcare to patients. The meeting is going to be an interesting one. I would be interested in your take on specialised centre vs. community-based vs. eMedicine delivered healthcare to treat and manage MS."

17 comments:

  1. ProfG. Surely Point 1 and Point 5 are not compatible as innovation appears to mean profit based on the current pharma model

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  2. So in a nutshell

    1. Listen up MS is a bad disease, 2. MS Costs Society a lot and direct drug costs are spiralling out of control; 3. people with MS want a cure and want to be better; 4. Give Researchers more cash....5. Give researchers more cash....6. Give researcher more cash ; 7. regulators get your act together; 8. repurposing is a waste of time; 9 help MSers when 1-8 of the above have failed.

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    Replies
    1. The first rule of Fight Club is you don't talk about Fight Club.

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  3. Apologies as I don't have time to read the document in full... not only fortunate enough to work full time but baking for Cake Break will take precedence re my out of work time over the next few days! It's in a good cause - raising funds for the MS Society. In response to your original observation, ProfG, I agree that community based care may be preferable for many people - not least because of the added difficulty of transport/parking etc at NHS locations and being exposed to the infections that seem to be rife there as well. I also think that yes, the MS Community needs to become more politically active and to get its voice heard. Not easy when people are already struggling with eg mobility problems, fatigue etc. When you read about the effect of MS on young adults in the document it is blindingly obvious that more needs to be done.

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  4. What a bizarre way of verifying I am not a robot! Is that because (correct me if I'm mistaken) robots don't eat sandwiches??!

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    Replies
    1. We have no control of the Google verifying process I have seen pictures of numbers but not sandwiches. As soon a google put something place the bots find a way round it and we are constantly removing posts for spell cachers; viagra salesmen; botox; organ enlargement
      etc, etc.

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    2. I've got sight problems and the new way is much easier, not perfect, but welcome.

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  5. Neurologists on a jolly?

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  6. Our rehab centre is meant to be a community based centre, but there's a long waiting list for help. Your needs are agreed and then nothing. It seems the budget cuts go under the Radar. Maybe there's a lack of vision of helping people to try and lead a fulfilling life.

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    1. Our politicians like to talk about "aspiration", but unfortunately the only type of aspiration they really recognise is the desire for money and material possessions (and I suppose power). They certainly don't seem to be aspiring to help those with devastating illness or disability. And they also seem to imply that absolutely everyone who is disbaled should be aspiring to work or else they are feckless. An absolutely morally bankrupt attitude.

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    2. I entirely agree with you and I suspect that since last Thursday, the situation is only going to get worse.
      I hope I'm wrong.

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  7. Ok, looking at the small print, this meeting is sponsored by Teva. Not a problem at all since they explicitly say they had no input into the agenda.
    Sounds like the outcomes will look like this:
    1. Pharmacogenomics are a valid and important marker for safety and efficacy of complex biological molecules
    2. Investment in science and innovation should be honoured and safeguarded by politics
    3. Patient safety is paramount and should take precedence over Health Economy in both- regulatory and payor decisions

    Great program and totally independent from Teva who have recently piblished that a copy of Copaxone differentiates itself from the original via its pharmacogenetic profile (of which nobody knows what it means) and who face increased pressure from other biosimilar filings. They repeatedly demanded those copies to undergo the same registration studies as new molecules. If you ask me why they would do this, being one of the biggest generics company themself... Their generics are small molecules- exact copies- so there is much less of an issue with different pharmacogenetic markers.
    Go figure- maybe there is still enough value in this medting otherwise.

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