Friday, 6 February 2015

Knowledge is Power if you have access to it

You said

"Knowledge is power" This phrase is used so often - here's my take on it (for what it's worth....) Knowledge is power when those who have the knowledge fail to share it with those that that knowledge could empower. 

"you need to use it to get what you want and need." 
It has been said by many on this blog that they do not feel empowered, just depressed by the knowledge that is shared. Surely it is far better to have knowledge, even if it is not always positive? 

Without having that knowledge you have no way to decide what it is that you want or need, or ability to focus on what may be feasible or achievable. Thus it is the sharing of knowledge that is empowering, and it is withholding knowledge that vests power in those who choose to not to share it with those it could empower. 

As a patient I have a right to decide what knowledge I wish to acquire and what I want to do with the knowledge I acquire, it should not be for others to decide whether I should be allowed access to the knowledge that they hold. 

The days of "me doctor, you patient" are gone, as they should be, and any subscribers to this archaic attitude need a good kick up the backside

30 comments:

  1. Mouse Doc - I just read about the BPA because I want to lobby for it a bit BUT I also read the article in the Guardian from 27 Nov 2012 about old drugs being repurposed - it seems that the process of testing old drugs for other diseases is well in motion already. The article even mentions that 2012 big pharma offered 22 failed drugs to academics and there are small biotech companies which re-use old drugs.

    The article also speaks of a World Drugs Repositioning Congress - what do they do? I originally thought about a meeting with academics, donors, big pharma people, politicians, lobbyists to agree on some novel approach with less regulations but does it still make sense if there is even a world congress which presumably lobby exactly the same things (with what result so far?)?

    Thanks.

    So my question is for me to understand: if all these things exist why do we need BPA? What would BPA make different in contrast to the above mentioned initiatives?

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    1. Pharma only reposition old drugs if they have a patent life and can get their return on investment and a bit more. Most MS DMTs are repurposed drugs; all have in common a patent life:

      1. Fingolimod - from transplanation
      2. BG12 / DMF - from psoriasis
      3. teriflunomide - from RA
      4. Alemtuzumab - from oncology
      5. Ocrelizumab - adaptation of rituximab
      6. Daclizumab - from transplantation
      7. Mitoxantrone - from oncology

      What we are talking about is repurposing off-patent drugs; that is what the BPA is for. We need an equivalent of an orphan drug act to allow pharma to repurpose existing drugs that have no patent life. Is it possible? Yes, it is but it needs a political solution.

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    2. Ok, I just read about the US orphan drug act - creating incentives for drug companies to make trials but in MS case it would be not novel drugs but off-patented ones i.e. no big gains for pharma.

      Is BPA applicable for MS only or would it help to include some other neuro diseases? Are the Parkinson's or ALS peeps struggling as well with off patent drugs not available?

      Because then it would make sense to put pressure on the EMA or is every single national governement responsible for the laws in their respective countries?

      Who are the top dogs you need to talk to?



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    3. The idea of the Big Pharma alternative was something suggested by ProfG in 2012 to try and help develop old drugs for new uses the bill you are taking about is a 2014 incarnation.

      The BPA allow academics to develop drugs or more importantly to provide the incentive for pharmaceutical company to invest the money to the necessary trials and recoup their outlay e.g. through providing market protection.

      In the UK this is easy because the NHS is the sole purchaser and they could easily agree to only buy from one producer, for a set amount of time. In principle it is easy to see how neuros can do the trials and how government could issue a licence, but then they need to think how you go from a trial to a licence as this costs pharma a lot of money to do.Also would pharma be interested if it is only UK centric, maybe if the disease indications are big enough like cancer.

      There is a view that we can repurpose drugs for conditions where there are no drugs, say for Progressive MS. This is the world view of what repurposing. This is to deliver drugs where there are none...But there some drugs for MS. The pharma way asprofG shows is to repurpose old drugs to get new patents.Maybe it is time to repurpose them back to the parent drug which would clearly work.

      So equally or more radically you could repurpose a drug for an existing indication for example RRMS and save the NHS millions of pounds, getting rid of the post code lottery. If cheap enough and an induction therapy ideally, this could then be used in ALL msers as a bedrock on which to layer neuroprotection studies and repair studies. The RRMS market is still lucrative and whilst this is the case the pharma focus less on progression.

      However, if pharma develop a drug for progression and get it licenced then unless the alternative is licenced then it may be time to drop it. There are many hurdles and in most cases, where I have spoken to academics about this they are in some utopian dream world about the process, such that I think pharma have a laugh when they see academics thinking about this.

      So ProfG has an idea in 2012 and the the private members bill, sponsored by Jonathan Evans, Conservative MP for Cardiff North was first read in mid 2014. years later. A number of charities including the MS Society are backing this bill.

      I suspect that having seen the idea of the BPA and spoken to members of TeamG, they have been thinking of the value of the approach. Indeed I believe they were talking to other charities, about this issues, sometime before the Evans Bill.Did we play any bit in this process?

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    4. However the Evans bill is just a bill and it may go nowhere if it is not supported and lobbying is still needed to move this forward.

      You can read he contents of the Bill here:
      http://www.publications.parliament.uk/pa/bills/cbill/2014-2015/0022/15022.pdf

      Conservative MP Jonathan Evans, leading the bill, said: "I still hope that the government will seize the opportunity to commit to taking the straightforward step of supporting this important bill.

      On its first reading in July 2014 there was no debate.

      On its second reading in the House of Commons on 7 November 2014. Because there were fewer than 40 MPs present, the bill needed to be debated again .. The order to read the Bill a second time lapsed. There is no indication when the Bill will progress further. So clearly MPs are excited by the prospect....not.! Wonder is this because so many members of the House have consultancies with pharma.

      What do Pharma think of this...I suspect not much

      In the Bill the idea is that the Secretary of State holds the licence so it makes UK into UK plc.
      How will the licence be administered? Will it be that the drug supply goes to the highest tender.

      Under the idea of the BPA, we viewed that pharma could be the licence holder, they would pay for the trials and keeps government from being the investor. The BPA vision can be pro-business.

      You would have to get the criteria for a licence sorted out, such as would it have to be a pharma quality phase III, as academic trials are unusually cut price versions. An academic trial in MS usually costs £1-2million a pharma trial ten or more times this. And with a load of cut price crap trials it could burden the government to hold loads of licence.

      The bill also gets NICE in on the act. NICE is there as a cost-cutting exercise to get pharma to drop prices, generic drugs don’t really need NICE to demonstrate cost effectiveness or are they going to be there to define the level of increment.

      So at the moment it is not a shoe-in for change I do hope it goes forward.

      Simvastatin is mentioned as an example,that could go to licence, but the simvstatin trial was a phase II trial and not a phase III trial and pharma has to do two trials. So why make pharma do two proper trials and let academics do one cut price job.

      Someone will call foul.

      However if the bar was reduced for pharma they are more likely to invest in trials such as one trial. like orphan diseases Maybe second trial is done after the company can make money or post marketing registry.

      You can think of lots of other ways to do something radical. Patents have a limited life span, and whilst it may take you a short while to work is a drug saves lives in a life threatening condition,but in a neurological disease the studies to show the drugs work are so long that there is no patent life left by the time they are finished so why wait.

      I applaud the idea of new Bill I how the fine details can be worked through but it will need the public and the politicians to get behind this.

      A world congress on repurposing....it is easy to talk what we need to see is action for MS and not just cancer or some so-called third World Condition.

      Am I in the pocket of pharma no, but we have to think this stuff through, which I fear was not the case when the DOH were offering millions for repurposing. In some cases pharma were offering some drugs for academics for re-purposing was this a rouse for pharma to get academics to hunt for uses for drugs, as one can get use patents

      If you feel you have a way into power, drop us a private line and we could talk specifics

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    5. The BPA was the big pharma alternative.....probably a bad title the idea is we need an alternative to the blockbuster culture currently in place with the CEO getting wads and wads of cash meaning prices that few can afford. It is not anti-pharma, but it does not have to be pro pharma either

      The idea is not MS specific and would work better if it is non-disease specific so that the lobby can be bigger and you can get change. I believe the MS Societies were talking to other societies,it is much more powerful and you are correct the more global the solution the more likely it is to work.

      Who is the best person to talk to.....ministers I suspect, the MS cross-party committee has been a dead loss as far as I am aware.

      We have been writing to some people but frankly until the next election is over, I suspect we will not really get anywhere.

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    6. Mouse Doc,


      This person is not British so influence on specific British policies won't be a priority.

      Can we make it more international? BPA on a pan-European level - any ideas?

      personally as an MSer I think we need somehow to involve pharma along the way - with a changed regulation and state incentives.

      so if we were to have a round table debate the pharma guys, the academics, the politicians could meet under the aegis of that VIP - would that be a good first step?

      would that be desirable or not?



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    7. If you can get repurposing for the globe that would be fantastic, incentivised pharma could be global.

      However I suspect you need a working party to work out can be achieved as pharma may not want a change the status quo and you have Europe v USA etc. The system is out of hand and unsustainable but you would need a clear view of what you want to achieve.

      I am sure the MS Societies will have been thinking about this.
      If you want to talk contact us

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    8. Re "The RRMS market is still lucrative and whilst this is the case the pharma focus less on progression."

      Given that
      (a) Worldwide the incidence of MS is increasing (and no-one actually really knows why)
      (b) Around 80 to 85% of RRMSers will become SPMSers at some point (i.e. progressive and no drugs currently available/licenced for treating progressive MS)
      (c) It takes some years for the required trials to be conducted and the results evaluated before a drug can be licenced for treating patients
      it thus seems to me that the lack of interest in finding treatments (either new or re-purposed drugs) for progressive MS is a somewhat short-sighted commercial strategy. If such drugs are effective and/or neuro-protective in RRMS as well, then even better. MSers get treatment and Big Phamra can still pull in the dosh. Maybe there is room for extended patent life to be considered - perhaps this would make the research and trial efforts and costs a bit more palatable for Big Pharma.

      Governments also need to look at the longer term picture and not just at the next election (fat chance!!!). As progressive MSers decline they need more services (both health-wise and practical such as support to live independently) and if they are no longer able to contribute to the economy by working and paying taxes the cost burden to Government just increases as the MS progresses.

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    9. Mouse Doc

      this is what I gonna do - I gonna write and ask if this person would be willing to support this initiative without much details yet becasue it's so complex and I don't know if he is interested at all at this stage. I will concentrate on my plight as an MSer and just mention the problems with off patent drugs and no incentives for progressive research.

      And then we'll see what happens - if he says okay then I will have a more detailed look into it and then we will need to contact the MS societies and whoever is there to shout out for MS.

      I will ask my contact to have a convincing word with this person cos I don't have any direct access to him - that's all I can do at this stage - fingers crossed.

      It will take time that's I am sure.

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    10. Good luck, if your contact gives financial support rather than political support we have just the project(s)

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  2. Profs,

    Knowledge is power if you can do something with that knowledge. Having the knowledge isn't any power in itself. Highly effective treatments for all stages of the disease is power. Unfortunately, there are no treatments for SPMS or PPMS, or to reverse deficits caused by relapses. Until these become available our power is limited. Knowledge is not a substitute for highly effective treatments. This blog is a two edged sword - it provides information about treatments / research results etc. = good knowledge, but then exposes us to all the grim realities of this disease (early death, loss of dignity....) = bad knowledge. As it currently stands, there is more of the latter (see recent post on swallowing) and not enough of the former. If the MS research world could make some real breakthoughs and make available treatments that would be benficial to all MSers then this knowledge really would be empowering. At the moment, I feel like a man on the ground beng kicked by a thug. The thug telling me when the next kick is coming (knowledge) doesn't empower me.

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    1. I’m the Anon who made the original comment which MouseDoctor has quoted above as an “article”, and while I understand where Anon at 2.07pm is coming from, and concur with many of the sentiments expressed, I think the point of my original comment is perhaps being missed.

      Regardless of how much of an optimist a person may be, a greater knowledge (good, bad and indifferent) about MS, current or “in the pipeline” drugs, and the potential impacts of both MS and medications, enables better informed decisions to be made about options. This is how and why the sharing of knowledge is empowering. In the health system in my country, clinicians simply do not have enough time with each patient for any decent consideration of options or their potential impacts. While the MS Societies play an invaluable role, they follow safe paths that are an appropriate fit with that role. Their content on websites and in brochures etc is intended to cater for the large numbers of MSers who don’t want or need the level or depth of knowledge that I do.

      I have already had one bad experience with a DMT, caused largely by failure of the manufacturer to warn me of compounding side effects when taken with other medications recommended by them. This has driven me to become as well informed as I can, and sites such as this blog do fill the gap between the lower level information provided by many sites and going back to school to do a science degree (and I’m way too old now to even contemplate that). As I may well be facing new decisions about DMT or no DMT, and if so which one etc, at least I have the chance of informed and intelligent discussion with my neurologist during the limited time I have with him. He does not attempt to restrict what he tells me, he just doesn’t have enough time to cover what is needed for me to make informed decisions. I have chosen to seek knowledge so that I can make best use of the time I do get with him and try to make what I hope will be the best decisions for me. As for the “bad knowledge” – if I know about this it is less likely to catch me off guard – I can be hopeful that the bad stuff doesn’t happen, but back that up with the Scout’s motto of “being prepared”.

      The intended targets of my original comment are those people who do not believe that patients have a right to knowledge they can use to help them with decisions and choices they need to make. It is denial of access to knowledge that I believe is a mis-use of the power of knowledge. Thank god for the internet.

      There is one thing I have to agree with 110% - MS is a particularly nasty and unpredictable thug!!! I hope I do see the day when I can take a pill which has no nasty side effects, will protect my brain, and even better - will restore my functioning to what it was ten years ago when I was a normal person.

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  3. I go to a very good psychologist who splits his time between my MS center and the rehab department. One of our main tools is called "acceptance and commitment therapy". If you can see a good medical psychologist learning the tools related to ACT will allow you to live better with the knowledge of your own status and knowledge of the mostly bad facts of the disease.

    This blog might be interested in incorporating posts about the current state of MS psychology and ACT. ACT is a tool used to help us live our lives as well as we can even while there are negative situations we can't fix. ACT is helpful to everyone, even relatively healthy medical researchers and scientists, so it can actually potentially unify us a bit. If you can fix a situation in your life, please do, but when you can't, that's what ACT is for.

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  4. On the subject of knowledge is power can someone kindly point me to the guidance of Lemtrada, specifically where it says active MS can be defined as MRI evidence and not just clinical relapses please? I've looked at the NICE Appraisal but cant see this. The MS Trust fact sheet on it says active is described as two clinical relapses. My neuro said this as well but I've heard the licence for Lemtrada is more flexible and can include new MRI activity too. I'd be grateful to be sign-posted to this specific part of the guidance if anyone can help.

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    1. Re: "Active MS"

      http://ec.europa.eu/health/documents/community-register/2013/20130912126598/anx_126598_en.pdf

      I think to use Lemtrada initially MSers will need to have active disease as defined clinically with relapses; this is how MSers were selected for the phase 3 trials. However, for the purposes of redosing activity can be limited to being present on MRI only.

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    2. Thank you although not what I was hoping for :-(. My first relapse was severe enough to land me in hospital for a week but as I've not yet had two (the golden number) I'll just have to wait for the second one which will arrive sooner or later no doubt given a recent MRI shows progression. I do worry how many more lesions / attacks my brainstem can take before I get permanent disability.

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    3. LEMTRADA is indicated for adult patients with relapsing remitting multiple sclerosis (RRMS) with active
      disease defined by clinical or imaging features (see sections 4.4 and 5.1).

      4.4 Special warnings and precautions for use

      LEMTRADA is not recommended for patients with inactive disease or those stable on current therapy.

      Patients treated with LEMTRADA must be given the Package Leaflet, the Patient Alert Card and the Patient
      Guide. Before treatment, patients must be informed about the risks and benefits, and the need to commit to
      48-months of follow-up after the last infusion of LEMTRADA.

      Section 5.1 describes the trials

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    4. no advice being given just addressing the original question. We have no control of order

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  5. Question for Prof G. Relapse and MRI are the tip of the iceberg. Yet you dose Lemtrada only based upon that.

    Should Lemtrada be given annually/bi-annually to help suppress sub clinical activity, and has this ever been tested?

    For those where relapsing inflammatory activity is suppressed, how should they monitor to check underlying activity that could lead to progression over time?

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    1. The current protocol is that people get treated yearly and not when their disease flares. In about 50% NEDA is achieved with 2 doses. MRI can detect activity

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    2. Hey MD.

      I get that's the current protocol, but my question is if 50% NEDA is achieved with 2 doses, and a big chunk of MS happens subclinically (as per Prof G's iceberg diagram), presumably a chunk of those patients will have ongoing subclinically/smouldering activity.

      The need for 2 doses suggests more lymphoablation is beneficial.

      So, if you were an MS'er, would you not prefer 3-4 doses to play it safe, and has that ever been investigated?

      I know the NHS accountants might not like it, but from a risk perspective if certainly prefer that if I was going down the Lemtrada route.

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    3. if you go down the lemtrada route it is used according to protocol do a proper study if you want to change thinvs it is the basis of e idence base

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    4. Hey MD - that's not a very helpful response.
      This thread is about knowledge being power. I agree wholeheartedly.
      I'm not being offensive or inappropriate; It's a polite, legitimate, logical scientific question based upon the knowledge Team G have given to me on this blog. Do you not think it warrants a legitimate answer?

      KNOWLEDGE:
      1) Team G frequently post an infographic that says most MS disease activity is sub-clinical (Prof G's "tip of the iceberg" diagram). You have taught me that whilst MRI activity and clinical relapse are good indicators of positive disease activity, the absence of them are poor indicators of negative disease activity (as much of the damage is being done sub-clinically).

      2) Lemtrada ablates some lymphocytes. 38% of patients are NEDA at 2 years (CARE-MS1), following a single dose. Which means that 62% of patients relapse, either on MRI, EDSS, or clinical relapse.

      3) A second dose of Lemtrada works by ablating more lymphocytes than a single dose alone. With 2 doses, teh knowledge you've provided is that NEDA rises to 50%. Which means that 50% of people have still not had enough lymphocytes ablated to prevent clinical activity.

      4) Prof G has shared the knowledge that NEDA is close to 80% with up to 4 doses of Lemtrada. Still this means 20% relapse. So, the trend is clear. When Lemtrada ablates more lymphocytes, it results in a greater proportion of patients being disease free (using MRI & clinical relapse as markers of activity).

      5) Based upon point #1, it follows that some of the patients who are NEDA according to MRI and clinical relapse (as in points #2, #3, & #4), still have active, smouldering disease which is going to cause atrophy and progression over the long term.

      5) You've taught me very well that "time is brain". If you let damage smoulder away subclinically, or allow too many relapses, you are up sh*t creek and there's no going back.

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    5. So, on to the "POWER"

      Your knowledge empowers us to take control of our own fate, by asking legitimate, sensible, scientific questions.

      A logical conclusion, based upon the facts you've presented, is that waiting to relapse (up to 4 times) is going to cost serious brain for at least 20 - 62% of patients on the drug, that could otherwise be avoided by giving everyone four doses of the drug.

      And, furthermore, it follows that since you've told us MRI and clinical relapse are not good predictors of disease activity, it is probably a significantly greater proportion of patients even than that - a majority even.

      So, my perfectly legitimate question to Team G is whether, in your scientific opinion as medical experts specialising in MS drug development and review, with a huge following of neurologists and patients, and with places on the advisory boards of the majority of big pharma, is whether the current guidelines for Lemtrada are adequate, based upon your teachings as outlined above?

      And have there been any studies, that you're aware of, to this effect?

      Don't tell ME to do the study! You guys are in a far better position to do these studies than I am. And you also have the influence through this blog and your relationship with pharma to ask the question. I don’t think it’s an unreasonable one – do you?

      Knowledge is only power if you do something useful with it. You seem to be saying “everything is rubbish – but don’t rock the boat”.

      Telling me to do the study is not helpful. I’m not a medical researcher. Unlike you guys, I have no access to funding, academic resources, or the necessary contacts to get it done. Prof G’s CoI slide shows he’s got links with every MS drugs manufacturer out there.

      You guys have both the knowledge AND the power. Why don’t YOU rock the boat??!

      To quote the mighty Spiderman, “with great power comes great responsibility”!

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    6. Time to take a chill pill:-) You have to realise rules are rules and seeing red and ranting is not helpful and then assimilating was meant is another thing.

      Neuros will only work on an evidence base: 4 relapses a year is an ARR of 4 in many trials tested these days the ARR in the placebo are is 0.5 so a relapse every 2 years and on drugs 01-0.2 so is one relapse ever 5 to 10 years. So to deplete the immune system every 3 months on the off chance of something happening would be a nonsense. Add to the cost of 3 doses of lemtrada at £7045 a dose that is an extra £63,000 a person a year and 9 sets of in patient extra infusions and months of extra risk from infections that you at risk following injection. There are risks to every treatment and the plain fact is you are not going to get neuros to go gung-ho on this without evidence base and guidance.

      So when you rant get your details right.

      Now to address your question if one should start treating again when there is disease break through verses waiting this a sensible question, but I don't think this will be possible with the current prescribing framework. You ask questions and many times we need to tow the party line in our responses, even if we do not agree with it, because it would be irresponsible not to do this. I am afraid it is not always possible to shoot the breeze and ProfGs hands are tied more than ours (non-medics).

      I was not asking you to address it, I said you need evidence base to do this. Genzyme could do study if they could get ethics to agree and then get the volunteers, but you actually seem to be asking me to address it.

      I am not a neurologist and so have as much power as you in doing trials. Maybe you need to lobby Cambridge and see if they are interested. Genzyme will have read your comment and decided it is a good idea or will ignore it.

      Should I get someone else to do the trial like ProfG, is he interested? However if Genzyme, don't want to do the study and we have to buy the drug so for about 400 people will cost us about £25-27,000,000 who can pay a trial costing that much....no public body has ever spent that much on an MS trials

      Importantly because this blog gives people a month piece you need to understand that we should not be your whipping boys, maybe I will post some of the abuse I take, some of it is too disgusting to post.

      Finally I have my own interests....and I can tell you now that developing Lemtrada is not one of them, in fact the sooner it is replaced with something as good and safer the better, but this is where we are are at the moment. I only have so many hours in a day to do things I am too busy rocking other boats. others will say "with power you have a load of batteries"

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    7. Thanks for replying. I'm chilled! :)

      On the details point, the facts in my rant are sound! :) I wasn't suggesting four doses in a year. I was suggesting 4 periodic doses (e.g. a year apart).

      It seems to me the evidence is already there, in that 62% are not NEDA after the initial treatment (which decreases with each additional course of retreatment). On the basis that 62% equates to a majority, and this is only looking at the tip of the iceberg in terms of MRI/relapse, it seems sensible to consider whether the protocol should be revised (i.e. everyone should have 3, 4 or x courses of treatment, without having to wait for MRI/clinical breakthrough).

      Appreciate this is more expensive, but what price do you put on keeping your mobility/faculties and preventing transition to progressive disease.

      I do appreciate the position you're in, in terms of rules. I don't see you as whipping boys and I've not criticised you or your efforts on a personal level. However, as an MS'er, all I'm interested in is what's best for an MS'er who has this disease today. And, sadly, it seems that the rules are often not in our favour (as they're influened by politics and accountants). Hence lots of us are having to take things into our own hands based on interpreting the evidence that's available so far (perfect or not).

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    8. Yes rules are not in your favour I agree.

      I believe people on Alemtuzumab will get annual MRI and if there is activity further dosing is likely to occur if we look at the Touhy et al. 2014 paper we can see how many people need three four or five doses but many people would not need 5 doses. Alemtuzumab is billed as an induction therapy does it need to be every year.

      What has not been reported is,does NEDA stop a few years down the line,meaning retreating isnecessary. We simply don't know maybe Cambridge has the data.

      Things may change as more people use the drug but giving yearly when it is not needed would not be cost effective,if you had an MRI scan every month it would be cheaper than a years Alemtuzumab.

      As one who has taken things into your own hands and have had HSCT, then using this logic you could have a new one every year just to be safe....but with each treatment you have the risk of the procedure....when do you stop.(p.s. We don't need an anwer)

      At some time point you have to test this in a proper manner. Maybe the MS register could keep track of you as people and buld up a picture of off label treatments. Make sure you sign up

      In immunology cyclophosphamide, which is a immune depleting agent used in HSCT inhibits immunity in someone with existing immunity, but depletes the regulatory cell population and makes subsequent induction of immunity far worse,so not everything has a simple answer

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    9. I'm a recipient of Alemtuzumab - first infusion in 2006 and second in 2007 (none since). I've had no relapses. Aftercare at Cambridge is second to none. I have an annual MRI (which to date have shown no acuvity) and an annaul EDSS (no change since 2nd infusion - I experienced some improvements in EDSS score after first infusion). Will it last? Time wil tell. But it has allowed me to continue to work fulltime.

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    10. Glad it's worked for you. Long may it continue.

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