Preliminary Alemtuzumab in SPMS survey Results

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Preliminary Alemtuzumab in SPMS survey Results

  1. 1. 8/31/2014 Alemtuzumab in SPMS - Google Forms Edit this form gavin@giovannoni.net Prior to reading this post were you aware that alemtuzumab has not been shown to be effective in SPMS? Yes 29 57% No 22 43% 51 responses View all responses Summary Do agree that the risk:benefit ratio of alemtuzumab does not justify its use in SPMS? Yes 12 24% No 8 16% Not sure 31 61% If you have, or had, SPMS and lived in an ideal world would you take the risks associated with alemtuzumab treatment despite the undefined benefits in SPMS? https://docs.google.com/a/giovannoni.net/forms/d/1NqCJgj0ytKCGT2HHyKUgQUt7Jc_3-sU02-And1iAHto/viewanalytics 1/5
  2. 2. 8/31/2014 Alemtuzumab in SPMS - Google Forms Yes 20 39% No 11 22% Not sure 20 39% Knowing that alemtuzumab does not stop progression in SPMS do you think a larger phase 3 trial needs to be done to see if it slows down the rate of secondary progression? Yes 38 75% No 6 12% Not sure 7 14% Do you think the hype surrounding the licensing of alemtuzumab for relapsing MS has created unrealistic expectations for SPMSers? Yes 36 71% No 4 8% Not sure 11 22% https://docs.google.com/a/giovannoni.net/forms/d/1NqCJgj0ytKCGT2HHyKUgQUt7Jc_3-sU02-And1iAHto/viewanalytics 2/5
  3. 3. 8/31/2014 Alemtuzumab in SPMS - Google Forms What type of MS do you have? CIS/RRMS 29 57% SPMS 12 24% PPMS 7 14% Other 3 6% Do you have any suggestions on how to manage the expectations of SPMSers who want alemtuzumab treatment, but can't have it under the NHS? Tell the patient the bare truth of knowledge as it should be for them. Cut the nonsense. Do not allow neurologists who know very little re MS from being allowed to see MSers MSers and prescribe inappropriate treatment in a wholly wrong fashion. There are very many MSers putting up with very very second rate care if any! My biggest suggestions are to (1) show them the scientific study that shows it has no impact on SPMS and (2) provide them some hope in an alternative. This is why I am not sure if the risks outweight the benefits. If there are no effective treatment or the patient has failed other potential fixes, I think the patient has the right to make the call on whether to roll the dice and try alemtuzumab. In my view, the doctors job is to make clear to the patient the risks/benefits and prevent blatantly wrong treatment choices, but it is not to prevent a patient from taking a reasonable long shot treatment. MSers should have the option of going onto this therapy regardless of their type of disease. As there is no treatment for progressive MS taking a chance on the possibility of benefit it better than waiting to deteriorate. Neurologists need to be on the same page when using alemtuzumab. Patients are confused when there is no consensus. No. The research doesn't back up that it would be useful if have SPMS. I have relapsing remitting with no significant disability YET. But cannot get my neurologist to agree that it should be used first line - I would be extremely keen to consider it (aware there are significant risks) if it was shown to reduce disability progression. My impression of the research is it does reduce progression, but neurologist disagrees. No https://docs.google.com/a/giovannoni.net/forms/d/1NqCJgj0ytKCGT2HHyKUgQUt7Jc_3-sU02-And1iAHto/viewanalytics 3/5
  4. 4. 8/31/2014 Alemtuzumab in SPMS - Google Forms Show them the results of the trials and discuss the risks. Be clear that the evidence suggests that they are pointless risks. Forget the costs, that's for you to worry about. We do not want to hear that we can't have something because it's too expensive, we want to hear that it won't be good for us if we have to hear a no. I attended a presentation by Professor Alastair Compston a few years ago and he was quite clear that Campath was only effective for the newly diagnosed. Apart from explaining the research, I don't see what else can be done. Sadly, dealing with desperate people is always going to be tricky. They need an alternative- maybe fingolimod? Sorry, I really don't know. Better diagnosis of SPMS might help because lots of people feel in limbo, are they RRMS or SPMS. Some say it does not matter but if it defines what treatment you can have maybe the transition needs to be diagnosed and discussed (and patients actively monitored). You need to know what camp you are in and can then inform yourself about the situation. Otherwise it is just going to have to be continued discussions on these sites and MS Trust/society websites. Where do patients get their info from? Then we get to treating early before we get SPMS and are no longer eligible. I am up for a phase 3 trial for SPMS though! Need to explain this post to MSers. LDN, Sativex? A nicer NICE? The red pill or the blue pill? No not really but can understand why people are so desperate for anything that will stop MS in its tracks Perhaps people underestimate the risks because there is not the associated PML with alemtuzemab so think anything else is worth the risk This sounds a bit vague, but I think that we all need a really good 'package of information' regarding expectations, treatment and goals for the progressive phase of MS. I have had RRMS for 11 years and know the day will come when I'm told it''s becoming progressive. The anxiety is already building. I've heard it's not necessarily going to be absolutely dreadful (I'm pretty good at the moment) but the whole subject seems to be studiously avoided, on the need-to-know basis - understandably. Isn't it time to blow it open? Break it down into manageable chunks, set out the meds for each bit of the picture? I reckon the hype around alemtuzemab is partly because of the vacuum of information. It needs to be put in the context of ongoing management. Something like 'What to expect/what we can do'. Only to reiterate that no, or uncertain, benefits accrue to SPMSers from taking Alemtuzumab. It might help if symptomatic treatments like Sativex and Fampyra were more readily accessible. People get desperate because there is nothing available/accessible that helps them. At the same time they are being knocked by having to reapply for PIP, with the 20metre rule, and I have heard anecdotally that it is getting much more difficult to obtain a Blue Badge. For many people these two things make life a little easier and helps them stay in work [and pay tax] (ie able to afford the journey, park reasonably close by etc) and bearing in mind that you don't recover from MS it shouldn't be made MORE difficult to obtain these things as time goes on. I think MSers should be more militant, which I realise is a bit of a tall order! Show them the inclusion criteria and that the mean age in the alemtuzumab studies https://docs.google.com/a/giovannoni.net/forms/d/1NqCJgj0ytKCGT2HHyKUgQUt7Jc_3-sU02-And1iAHto/viewanalytics 4/5
  5. 5. 8/31/2014 Alemtuzumab in SPMS - Google Forms was less than 4 years - there risks are relatively high with unproven benefit. I was on the cusp, diagnosed 11 years with significant disease accumulation. I live in the US & traveled to Germany for Alemtuzumab April 2014. I have experienced a renaissance of remission. I am alarmed by this article and conclusions of the neurologist. By his criteria I would not have qualified (11 years, disabling fatigue, unable to more more than a few hours a day, resigned primary career in medicine due to mental fog & large amounts of pain & spasticity). I now have almost NONE of these symptoms & feel as if I don't 'have MS' excepts for the use of 3 tablets of muscle relaxers a day. I don't even use pain meds or anything for fatigue. These are all chronicled on the blog Lemtrada.blogspot.com I shudder to think Disclaimer Number of daily responses https://docs.google.com/a/giovannoni.net/forms/d/1NqCJgj0ytKCGT2HHyKUgQUt7Jc_3-sU02-And1iAHto/viewanalytics 5/5

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