Tuesday, 7 April 2015

No Evidence of Disease Activity We need to Bang the drum.

I intercepted an email between some Neuros

We need to bang the drum for NEDA

"For NEDA to be an effective and worthwhile goal we need
(i) Effective drugs,
(ii) for *all* people with active MS,
(iii) as early in the disease course as possible.

For that to happen we need to overcome the following hurdles:
- Education of pwMS and our colleagues (junior, senior) about the importance of early intervention.
- Individualised medicine yes, but with a drive towards early intervention – we need to make it very clear to pwMS (and colleagues) that if they choose not to go on (prescribe) DMT they are much more likely to accumulate damage and progress.

- Better management of adverse effects so pwMS can be better reassured this is in hand, or even better: effective drugs with fewer adverse effects

- Affordable DMT, otherwise we will not overcome, on a population level, the problem of having to treat so many pwMS at a young age for progressive disease".


Did the EMA/FDA & Merck Serono make a mistake to throw Movectro away? 

We think so

What does this say?

No Evidence of Disease Activity means that you can not sense of any clinical worsening and there is no activity on the scans-remembering that scans don't see every thing.

There are cautious MSers and cautious Neuros who will wait and see how things go.

If there is NEDA, then the softly, softly approach maybe appropriate. However, you need to have regular scans to ensure that your MS is kept under control.

We also have to remember that drugs are not 100% effective

But what would the situation be like without aiming for NEDA?
The bad old days?

Unfortunately "affordable" and "DMT" do not appear in the same breath. Until that changes then there will be many, many people in the World who do not get access to DMT. So NEDA for "the haves" and natural history course for the "have nots".

In 2019 the first oral DMT come off patent and the non-biological generics begin to arrive....There are some generics already here that would give currently DMT a run for their money, but they can't be used because of the system in the West. Furthermore because they are not licensed for MS in the West, they won't be used in the East and South


Maybe some brave Neuros may want try to investigate the possibilities of generics, but the system is biased against this ever happening unless there is a patent and pharma in place.

Maybe because of the move to find treatments for Progressive MS, The International Community will find a way to develop generic drugs for pwMS.


Should we be holding our breath.....this is the Challenge

13 comments:

  1. Based on the breams score system you were looking at yesterday, is that how you decide whether to be aggressive ie lemtrada etc or a little emote conservative with something like copaxone?
    Is it usually safer to go with crab before a more aggressive drug in the event that the crab drugs work? The only thing we know is they don't stop ongoing inflammation like lemtrada? Is that correct?

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  2. It's hard not to agree with the NEDA and treat early approach, without it, you are truly left to natural course and might as well be in an era when there were no DMTs. I believe you need to bang the drum much louder than you may even realise? It's not just general neurologists, there are esteemed MSologists at some of the most well known institutions in the UK, who do not think regular MRIs, early treatment, etc makes any difference. To be honest, it is hard to reconcile why there such differences between different neurologists.

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  3. "Is it usually safer to go with crab before a more aggressive drug in the event that the crab drugs work? The only thing we know is they don't stop ongoing inflammation like lemtrada? Is that correct?"

    This is a million dollar question - a trial comparing early escalation versus induction treatment would be the way to establish this. Such a trial would cost - easily - in excess of £3Mill, which is small change for the big players in the field, however very difficult to get from public funding sources. So, who is going to pay for it? Any suggestions wellcome (sic!), and we'll put in an application. Is crowd funding is up to these amounts of money?

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    1. The real question is the long-term difference in outcomes - so a trial of 2-3 years will not provide the answers. Proper analysis of good registries would be more informative.

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    2. We can recommend that MSers to sign up to the MS registry in the UK or other databases in your country

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  4. Hi DrK
    I think if they can get the combination therapy with lemtrada to help reduce the risk of secondary issues then it would be lemtrada every day. I suppose at the same time, many many people would take a treatable thyroid issue over Ms!
    I think a lot are waiting for other breakthroughs Ie your charcot project being one of them, that and whatever announcement MD2 keeps talking about

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  5. "I think a lot are waiting for other breakthroughs Ie your charcot project being one of them, that and whatever announcement MD2 keeps talking about"

    I agree with the sense of urgency about new approaches to better understand and treat MS. I believe the announcement MD2 has been eager to conceal is now only a couple of weeks away - watch this space.

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  6. Great stuff thanks again all
    As you can imagine it's a lonely place when all you get are the odd newspaper leak about some magic molecule that is ten years away from being any use.
    Thanks agin

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    Replies
    1. Please do not build up expectations, news will be reported as it arrives

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  7. I don't understand what you mean regarding expectations? You are all contradicting each other now? It's confusing at is, without all this!

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    1. Please Read Unrelated Blogger comments April and link this to comment of DrK above

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    2. I don't think we're going to get any news before the AAN 2015 conference which is being held 18-25 April. You can read the schedule on its website

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  8. Oh super biotin was the big show

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