PoliticalSpeak, OffLabel & ClinicSpeak: poor access to DMTs

I feel like I am banging my head against a brick-wall when it comes to off-label prescribing. #PoliticalSpeak #ClinicSpeak #OffLabel 

“We have been promoting the Barts-MS essential off-label list of DMTs for several years with little uptake across the world. Why? We simply don’t have the marketing and PR budgets big pharma has at getting the message out; our only medium is social media (free) and some rare platforms at international meetings (not free). When I originally put the list together I was really only targeting resource poor settings, i.e. low to middle income countries without socialist healthcare, and to cover people such as illegal immigrants and refugees with MS in high-income countries. However, the study from the USA below has made me change my perspective. I think off-label prescribing should also apply to the uninsured in high-income countries who do not have adequate health insurance coverage.”

“In the survey below of pwMS in the USA not taking DMTs, a large number cited insurance/financial concerns as the sole reason. Amazingly, a quarter of respondents taking DMTs partially or completely relied on support from free/discounted drug access programs. This figure tells you what a problem high drug prices are causing in the USA and that the rich, or well-insured, are essentially subsidising the poor or uninsured. Is this a type of capitalist socialism? I also note the problem of insurance denial and problems with co-payments, something that doesn’t happen in the UK.”

“There are arguments, and then there are arguments, to support the high-cost of innovative therapies, but when pwMS can’t afford to be on these treatments we need some pragmatic solutions. Surely, the use of off-label therapies that have an evidence-base to support their use in MS is one solution? How do we get the world of MS to adopt off-label prescribing as a solution to the problem of under treating, or not treating, MS? Are we fighting a losing battle?”

Wang et al. Health insurance affects the use of disease-modifying therapy in multiple sclerosis. Neurology. 2016 Jun 29. pii: 10.1212/WNL.0000000000002887.

OBJECTIVE: To evaluate the association between health insurance coverage and disease-modifying therapy (DMT) use for multiple sclerosis (MS).

METHODS: In 2014, we surveyed participants in the North American Research Committee on MS registry regarding health insurance coverage. We investigated associations between negative insurance change and (1) the type of insurance, (2) DMT use, (3) use of free/discounted drug programs, and (4) insurance challenges using multivariable logistic regressions.

RESULTS: Of 6,662 respondents included in the analysis, 6,562 (98.5%) had health insurance, but 1,472 (22.1%) reported negative insurance change compared with 12 months earlier. Respondents with private insurance were more likely to report negative insurance change than any other insurance. Among respondents not taking DMTs, 6.1% cited insurance/financial concerns as the sole reason. Of respondents taking DMTs, 24.7% partially or completely relied on support from free/discounted drug programs. Of respondents obtaining DMTs through insurance, 3.3% experienced initial insurance denial of DMT use, 2.3% encountered insurance denial of DMT switches, and 1.6% skipped or split doses because of increased copay. For respondents with relapsing-remitting MS, negative insurance change increased their odds of not taking DMTs (odds ratio [OR] 1.50; 1.16-1.93), using free/discounted drug programs for DMTs (OR 1.89; 1.40-2.57), and encountering insurance challenges (OR 2.48; 1.64-3.76).

CONCLUSIONS: Insurance coverage affects DMT use for persons with MS, and use of free/discounted drug programs is substantial and makes economic analysis that ignores these supplements potentially inaccurate. The rising costs of drugs and changing insurance coverage adversely affect access to treatment for persons with MS.

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • "our only medium is social media (free) and some rare platforms at international meetings (not free)"

    Why are these your only media ?

    Are you already sharing this information proactively with the MS charities and major MS patient forums in countries like the US ?

    Are bodies such as the Neurological Association of South Africa (and their equivalents in other countries) not receptive to direct contact from you with an explanation of the benefits of off-license prescribing ?

  • What are the MS Societies notably the international federation doing about this or are they too much in the back pockets of pharma

    • I can't answer the question about how pharma and societies inter-relate but the answer to the former is clearly nothing.
      Some people think that it is wrong that people get theoretically unproven drugs but something rather than no chance of anything is surely sitting on the fence and doing nothing. Maybe they should fund some studies in such resource poor countries to give people an option and in doing so get the data needed.However one may find that the neuros are frightened to not prescribe the phase drug

    • I am a Director in Pharma and a mother of a MS young women. Pharma will never allow you to push your off label drugs, even in poor countries. There is too much (revenue) risk of spreading cheap medecine everywhere. Pharma do also finance mamy patient groups… Yes published studies will help to convince doctors to prescribe. It is a long and difficult task.

    • thank you!!!! one of my pet peeves. except that i want to point out that, at least in australia, the research arm of the society, ms research australia is controlled by a board of directors, the majority of whom are friends with this blog and the people behind the blog.

      so i have to ask, why are they doing nothing?

      is it because it would take a braver than an average risk averse neuro to prescribe off label, where they are not protected by fda or equivalent approval?

      there is a lot of excitement in the ms neuro community about ozrelizumab. rituximab is available now and is pretty cheap these days as it's off patent. why are so many neuros waiting for magical ocrelizumab when rituximab could be prescribed off label now?

      i do know that americans are accessing rituximab. i'm not aware of a single australian person with ms receiving rituximab as treatment for ms, but i'm aware of at least 2 people with ms whose neuros are apparently waiting for ocrelizumab to switch them to off their current drug as the only other option is lemtrada, and the neuros don't want to take the risks with lemtrada.

      to me, all of it makes little practical sense. the magic word seems fda approval.

    • ps. ethics and practice often collide. because it's unethical that poor people get theoretically unproven drugs (coming from the ethically sound idea that poor people shouldn't be experimented on), the practical effect is that poor people often get nothing at all. so everything stands still and frozen.

      this ethical standard is held above the idea of individual choice. in circumstances described – where the ethical dilemma produces inaction and a possible worse result (no treatment at all) – should we still hold onto the greater but impractical ethical ideal or should it be the choice of an individual person with ms? Currently, my understanding of the law is that it's in the hands of the treating practitioner whether to prescribe off label. public hospitals can hide behind ethic committee approvals and private practitioners/hospitals need to be brave.

      no matter the system, socialist, capitalist or communist, it seems being vulnerable and powerless just sucks all around.

    • TheLadyInRed."Pharma do also finance many patient groups.."
      That's not entirely altruistic though is it? In many cases it, to my eyes at least is to raise the profile of their drugs in the hope that patients pressure their doctors to prescribe them. Forgive my cynicism.
      "Yes published studies will help to convince doctors to prescribe."
      Getting the money to do these (expensive) studies is very very difficult if you're trying to get it funded from the public purse/charities as obviously pharma won't fund such a study to confirm the efficacy of cheaper, safer and more efficacious agents that will hit their revenue stream. A point the good Dr K is all too well aware of.

    • The MSIF is not at least last I looked a resource wealthy entity. In fact, less so than many a popular not for profit chat lounge / forum.

      The fact is none of these patient associations are resource rich. In terms of individuals we think perhaps a quarter million dollars a year is a great deal of money. Its not.

      Not to defend Pharma mind you, On Facebook often see people scream about Pharma profits yet they do so on a venue that now is in the 220 billion dollar range that sells everything conceivable about them in respect to demographics, trends on and on.

      In fact, my account there was temporarily placed on a hold when we activated on the UK disability matters. Didnt stop me, where there is will there is way.

      In respect to pharma sponsorships within patient associations the initiatives sponsored are highly targeted and monitored. It can free operating capital towards other purposing.


      People are far from powerless. They scurry about in the world of MS in every possible direction except one that is unified.

      One of the big things patients want is global ms awareness. That is to say for general populations to be aware of MS. If one asks them why, most have no reasoned responses. Disability is known worldwide.

      Yet, younger populations tend not want this as their disability is less than those that are older generally.

      The active online MS patient community is less than 1% of the global MS number. Less than .2% of that 1% is highly activated and most of those are people who are over 40. While they are few their mouths are large.

      The same people who jump for joy when Biogen hit the rocks over and over. The same people who scream murder at a Tecfidera commercial saying it in no way portrays MS proper. Truth is it did not purvey their feelings on MS proper. So, they hammer at it. Mass media likes its page views as it directly equates to advertising revenues as these few rally the others.

      Results, the most prolific Pharma entity in MS starts backing away from the disease.

      Point being, as all ends work against one another while common perception is the opposite more damage and less progress takes place.

      My biggest fear at this point?

      Ocrelizumab hits the market. If what is said of it is truth it may be the most effective treatment to date and one that to an extent can help progressive MS. If Roche is smashed by a few handful's of adverse events and see's similar results as Biogen witnessed that may well be "Game over."

      Pharma is what it is. Multi-billion dollar businesses. There are many in this world. Walmart is a favorite, they own near nothing in stores its all consigned many items with markups in the ranges of 1000%. But if that 1000% results in a $7 expenditure by the consumer, they dont think twice. If it were $7,000, then they do. Its not the "end price" its the markup that shows consumer rape.

      Money talk. National MS Society in the USA had revenues of about 250 million last year. A full third of that went to research.

      In comparison to just one thing. Grand Theft Auto 5 video game made 800 million dollars in less than 24 hours. By 2014 it achieved 2 billion dollars in revenues of "new" copies sold, not factoring in used and resold.

      Health globally is about priorities. The individualistic patterns of patients / families towards self are what affords them no power.

      Caring about others takes more effort than saying, "I do" or writing some articles or saying, "It will get better tomorrow there is always hope." as can be witnessed on chat venues that also draw in millions of dollars.

      At Barts MS here are medical professionals who are activated. They are few. They have already changed the world.

      Just think what could happen if the many had the passion, compassion for others as these folks do?

      That is the achilles heel in all this. Whether answers are in activism or other means.

      Doctor Boster of Ohio Health puts it into one sentence that rings ever so true, "It takes a village."

    • I don’t completely follow.

      My comment about powerlessness wasn’t directed at people with MS. It is directed at the majority of the world population. And I stand by it: sucks being powerless, no matter what the system.

      Just became some people with MS can’t articulate why they feel they want global MS awareness doesn’t mean the ideal is faulty or unreasonable. That disability is known worldwide is neither here nor there in the context of MS awareness.

      I hope I’m misunderstanding your statements: are you really saying people with MS with large mouths are the reason this Big Pharma is backing away from MS? Unless I’m misunderstanding you, I can’t even respond to such a statement cos my mouth is hanging wide open and I can’t shut it. Are you asking for unity while calling some people with MS “large mouthed”? Anyway, I should be able to pick up my mouth off the floor in a few minutes.

      Do you know what my biggest fear is (on a global scale)?
      That Ocrelizumab turns out to be a wonder drug. That it is no better in reality than Rituximab. And that, for financial reasons associated with Rituximab going off patent, instead of putting money, effort and better trial design into Rituximab in 2009, Pharma took essentially abandoned it because its patent was exiring and they could start a whole new fresh patent with Ocrelizumab.

  • I started to form a lobby group, but don't really have the time at the moment. For all those who volunteered, thank you. I have not forgotten you. I am doing 3 jobs and have spent the last 6 months churning out grant applications, that my night job. May be I need to start a non-profit to take this initiative forward. The good news is that one the Big Pharma Companies have agreed to start a humanitarian DMT access program and they have contacted me to help. I think this is a start as neurologists and pwMS living in resource-poor settings view off-label drugs as inferior and second best. Therefore providing access to licensed innovative DMTs may be one way of getting at least some of these neglected pwMS onto a treatment.

    • sounds like you needs slaves. i mean young graduates desperate for training and interaction with mentors. surely they could find the time for a lobby group and the professional networks they would get out of it would be worth their time?

    • Hello Professor G.,

      I read the same study and yes I was rather surprised by the varied access in the USA here. I am also sure that the current system that has resulted in the DMT costing here is going to get reviewed no matter which of the candidates gets erected (I no longer call it an election, its more like Viagra .vs. Extenze – Knowone knows how it will turn out but pretty sure either way the purpose of those two pills will be the end result for Americans 🙂 ) (subliminal satire included at no cost).

      What is key for Pharma to both understand and that they can leverage globally is that they can change perceptions by engaging more humanitarian work in diseases that are chronic. Its nothing new for them to provide humanitarian meds towards the more common forms of infections, aspirin on and on.

      The fear I must assume is a snap back from those who need pay.

      I know many people here who get assistance in med costing in MS from Pharma and some that get their dosages free as they simply cannot afford it. They are grateful.

      I noted to you in a communication one of the large issues that we found with MS and the online "deal". I noted what the result is where while some folks believe they are doing "good" are actually working against those same folks they believe the are doing good for as well as themselves.

      Pharma is business and they do have everything from Boards, investors, employee's, governance, patients, clinicians and then some to satisfy. Its a far far more complex industry than the average patient whethr they have a cold or MS realize.

      The public tends these days to choose to apply simple thinking to that which is complex and unfortunately that is now well encouraged by powers that be.

      When I say, that the best ways IMHO to have greatest impacts are mutually beneficial types of relationship I mean that. But achieving them given landscapes is extraordinarily difficult for many reasons even when the "online MS. patient commanders" are taken out of the fray.

      As I said to another respected MS Entity just last week.

      I have 3.6 years of college in the medical field, chemistry, microbiology and more. However, I am no more qualified to suggest to a MS patient or advise them than I am to build a car.

      While I endure MS and can relate to what many a patient endures and have more than a rudimentary knowledge of MS that by no means qualifies me to lead others.

      The reason I state this to you and your staff is I know your passion to end this disease and until then help as many lives as you can.

      There are problems across this entire landscape and much of it exists due to matters that are rooted in the actual patient population.

  • A different approach might be to make the people who have MS aware of these off-label drugs that can help them. They then go to the specialist and ask for these drugs. To make people aware do some advertising on the Facebook groups and other similar forums in these countries.

    Another idea might be to ask journalists to write articles. You are looking to give the knowledge to the people that there are solutions to the problem of suffering from MS

    • Completely agree with you Patrick, this is one of our key trajectories, i.e. spreading the word, and providing independent information. One of the objectives of our charity will be to support this activity. We've recently launched a video to increase awareness of the problem and a possible solution (https://www.youtube.com/watch?v=Yk7_JpK33i4), but we evidently need to do more.

    • I posted something on the facebook Lemtrada page about my experience with cladribine pointing out the good tolerability. I was promptly kicked out. Maybe Genzyme marketing is running the FB page.

    • Tom, I suspect that self appointed guru die hard patient activists are the issue lol, I doubt they're getting paid by anyone. If they did their behaviour would make a whole lot more sense lol. (I'm talking about two in the context of Lemtrada facebook groups and about three in the context of HSCT facebook groups)

  • Off-label for un/underinsured could quickly be interpreted as "use poor people to test unproven drugs." While I trust you, and would like access to many of those drugs myself, you're setting up a very uncomfortable precedent. Is the point of trials for safety and efficacy to ensure nothing bad happens to people with money, then? I can't think of another medical situation where we blatantly give different treatments to people based on their ability to pay.

    • You have to remember the licensing process has mainly to do with "marketing authorisation", i.e. whether the company can advertise their product specifically as a treatment for MS. The trials completed for Cladribine provide class I evidence for efficacy and safety to the point that judgements calls can based on 2-year trials, which is the standard in relapsing MS. It is reasonable to make treatment decisions based on such evidence without a marketing authorisation for the specific indication MS. There are thousands of "off-label" prescriptions for a plethora of indications every day in the UK, and across the Globe. Can we expect anybody to pay millions of £££ to obtain a marketing authorisation for Simvastatin once/if their phase III trial is sponsored, recruited and successfully(!) completed, for a drug that costs pennies/day? It's only because the MS DMT industry is worth >£20bn that makes many so reluctant to think outside the licensed box.

    • Bennie, yes, I am talking about giving different treatments to people based on their ability to pay. A large number of pwMS, who have active disease, are not being treated because they can't afford high-cost innovative licensed treatments. Most of these people live in resource-poor environments. I am saying it is better for them to be on a cheap treatment, backed by evidence, rather than them not being on any treatment at all. If you disagree with me then please read my posts that I wrote on my sabbatical.



  • If you truly believe in this, then you can try to advertise it the way CCSVI or stem cells or HSCT are promoted. Get the BBC or NY Times to write articles on the miraculous effects of these off-label drugs, personal accounts of how MS patients have benefited, are climbing mountains or jumping off planes while on these off label therapies.

    • TC I trust you are not serious. Nothing I suggest encourages overshooting the mark, departing from scientific rigour and fuel unrealistic expectations.

    • DrK, I am not serious…just expressing frustration. CCSVI was such a hot topic when I was diagnosed and it turned out to be nothing. I was very angry at how much attention it got and how that falsely raised my hopes. Off label drugs seem like a very reasonable and practical approach, but like ProfG mentioned, getting the various MS players to consider them seriously is like banging your head against the wall.

      I personally would greatly benefit from this initiative. I had an anaphylactic reaction to Tysabri and since then my neurologist and I have attempted several times to convince my insurance company to approve an off label drug. We haven't had much success. You would say I could try lemtrada, but I already have thyroid issues, so I am not comfortable with it.

    • But TC brings up a good point. When I was diagnosed, every other day people were sending me Terry Wahl's video about curing MS by eating your vegetables. I think one of you should do a TED talk.

    • What like this one…but not exactly TED

      Relatively Safe
      Convenient (few doses, no compliance issues, monitoring minimal)
      CNS pentrant

    • Well, my partner spent 6 months on Tysabri and is now 7 months post HSCT.

      She has had no new lesions on either Tysabri or HSCT. She’s never had a recognisable relapse, and neither HSCT nor Tysabri changed that lol. She did get a small new lesion just before starting on Tysabri.

      Tysabri lessened the intensity and frequency of pins and needles and other neuropathic issues with her legs. She had a tough time on Tysabri with various reactions at first (infections), though that settled about 4 months in, which is when her legs started to feel better on Tysabri. Perhaps if she stayed on Tysabri longer she may have had more relief in her legs.

      At 7 months after HSCT, her neuropathic leg issues have improved considerably – about 90% of time they're not existent and the rest of the time, when her body is under stress, but for now it seems short lived and nowhere near as intense as it used to be at best of times.
      She feels her bladder has also improved. I agree that she spends far less time in the bathroom trying to pee then she used to, that I can actually hear her pee hit the toilet for the first time in a while and that I can't remember the last time in recent history that she came out of the bathroom upset that she couldn't release any urine at all. This used to be a regular occurrence around period time (she says the competition makes her pee shy lol). She is not going to put herself through urodynamic tests to objectively decide whether there's an improvement or not, and equally I'm not concerned about the placebo effect (if that's what it is, where can I buy more placebo chemotherapy please?).

      I've been with her every step of the way. If she had stayed on Tysabri and didn't have HSCT and I knew then what I know now: I would honestly be upset. Her quality of life now is better than it was 12 months ago on Tysabri.

      She didn't have HSCT because she thought it would cause improvements in her functions or her well being. She had HSCT because Lemtrada was her preferred treatment and she felt that non myelo HSCT had a risk profile she was more comfortable with than Lemtrada. Tysabri wasn’t a long term solution for her, she had spent 5 years with monthly hospital infusion treatments for an unrelated condition and felt she had paid her dues with monthly infusion treatments and was done if there was any alternative available.

      Incidentally, she climbed a live volcano 5 months post non myelo HSCT (with her haemo’s support). She could have climbed the live volcano pre HSCT too, but the point of pride wasn’t ‘doing it’ – it was doing it 5 months after HSCT: she was well enough to climb 2000m up a steep winding 10km path 5 months after chemo. She actually powered on in front of me lol, I think she is brilliant.

      The point in crapping on about all this? Because “improvement” with MS is defined as an improvement in the EDSS, neuros’ understanding of how people feel on and post MS treatments is always going to be flawed and lacking. Pity, because the same neuros are the ones controlling people’s access to treatments.

    • Funnily enough (in response to a person who is annoyed at the movements which were disappointing):

      I'm mighty annoyed with neuros about what they put us through re non myelo HSCT. They talked up the safety of Lemtrada (thyroid is just a pill a day) and talked up the risks of non myelo HSCT (actually, in hindsight, I'm not sure the neuros we spoke to about HSCT even knew the difference between myelo and non myelo).

      We were told in appointments that it would cause her cancer to return because we don't know how the immune system is reconstituted afterwards (her oncologist, breast surgeon and heamo all looked blank at this and said they didn't think so), that it would cause her to end up on a ventilator, that it had a high mortality rate, that it wouldn’t for her because it doesn’t work for progressive MS (this was just a doozy – said by the same man prepared to prescribe lemtrada to her lol), that it’s a great treatment for some people (implication being that it wasn’t a great treatment for my partner, coming from my partner’s main neuro who at the time was also prepared to prescribe lemtrada to her), that if she had HSCT and it didn’t work they wouldn’t know what to do next (this was my favourite peace of useless advice cos I can answer it myself lol). I could keep listing the HSCT warnings we received but it would take up a whole page.

      Instead of spending time preparing for the procedure and preparing for the after procedure – learning what to expect, how to keep hygenic etc – I kept reading and reading and reading journal articles trying to understand why the neuros were putting the fear of death in her and me. I should have been relieved but I was so bloody annoyed when we walked into the hameo’s office for the first time and he assured my partner she would not die from the HSCT she was going to have. I was there and I laughed and I said that’s a big statement to make, I’m a lawyer, are you still prepared to say it. He laughed back and said yes. He looked at my partner and said you’re fairly young, you’re very healthy, you ain’t gonna die from this.

      We repeated the info to my partner’s main neuro and she said yes, most people who come back from Russia are doing really well.
      I should have been happy and relieved at the neuro’s comment but instead I lost a lot of trust in her and in neuros in general: if that’s the case, were they just lying or exaggerating beforehand to talk my partner out of her decision? And if that’s what they do when they’re asked for meaningful information, how could I trust them with anything?

      Actually, having caught my partner’s main neuro in an outright lie about the availability of some Tysabri related testing (the lie was actually in writing to make it even funnier) and the hospital MS registrar in an outright lie about having performed some tests she hadn’t on my partner, I’m not sure why I’m surprised I don’t trust them lol. After being lied to by the main neuro, I came across some research that said 1 in 10 doctors admit to lying to patients: that made me laugh hysterically. If 1 in 10 actually admit it, how many lie and don’t admit it? Lol. Terrifying thought.

  • You guys need to realise that licensed medications are aspirational for developing countries. Having access to new drugs and being able to afford them is a sign of development and an increase in living standards. No neurologist wants to settle for second best and treat their patients as second class citizens. I am therefore are much more supportive of making the licensed treatments available more cheaply to developing nations. The charities and GMOs are right in taking a stance against off-label prescribing. The sanctioning of off-label prescribing for developing countries is simply a form or pharmaceutical imperialism. Wide uptake of off-label prescribing would also chase away much needed investment in our countries from the Pharma industry. Although you intentions are good in the short-term the long-term consequences of off-label prescribing would be to keep standards low. What we want is investment and a raising of standards.

    • I'm not sure whether somebody with MS primarily aspires to get (EMA/FDA) *licensed* medicine (and develop the country as their EDSS evolves…) – wouldn’t their first objective rather be to gain access to safe and effective drugs? In India price levels are low driven by fierce competition, which makes them 10th in value but 3rd in volume. Good medicine (including R&D) *can* be made affordable. To me your vision smells of board room rather than of a hospital bay where somebody newly diagnosed with MS ponders their future against the backdrop of unaffordable drugs. Sure, access schemes of licensed MS drugs sounds great if they achieve what they say on the tin, but perhaps we need some good examples?

    • Couldn't disagree with you more..you must be a supporter of MS Soceity X:-) or pharma Y. This is a simple cop-out to do nothing! You want to raise standards but where is the action? Where is the evidence?

      We have had DMT for twenty years and the cheapest is more than a years salary for many countries, where is this cheap access? It does not exist.

      You are talking a good game but the fact is those second class citizens are really third and forth class as nothing is being offered.

      You say second class drugs but the italians study reports that Azathioprine is no worse than the CRAB drugs, CLAD is better than the CRAB drugs. This is not second best.

      I know my view falls on deaf ears but when your ears are in the pharma pcket unfortunately it means you get the blinkers as well:-(.

    • Dear Aspirational Third Worlder

      I think your use of the term 'pharmaceutical imperialism' is misguided. To the best of my knowledge this term was first used in relation to the Pharma Industry holding poor countries to ransom with high-cost anti-retroviral drugs at the start of the HIV pandemic. This is what led some countries to enact legislation so that they could define anti-retrovirals as essential medications, ignore patents and start producing or purchasing low costs generics themselves. With regard to the latter several Indian generic pharmaceutical companies played a big role. The anti-Pharma-Imperialism movement actually started in South Africa and has proved to very successful albeit it late in the HIV epidemic.

      I wish MSers and the MS Charities could become as militantly active as the HIV advocates then we would see some action in relation to the global treatment of MS. When I think about the cumulative number of lost neurons, or lost brain volume, in MSers the world over due to therapeutic nihilism I feel deeply upset with a sense of despair.

      Please read this blog post about Pharmaceutical Imperialism; I sincerely hope it changes your mind.


    • HIV has had a great deal of activism in large part due to the nature of the disease and its transmission. There was global fear. The LGBT community also took up upon it which resulted in significant traction.

      Are you stating that you believe activism is the only means by which resource poor nations may get access to DMTs?

      I tend to think there are other ways to approach this.

  • I touched on the subject of the use of off-label here in Brazil for the treatment of MS and received as resident response neuro who answered me "Dr. sector chief doesn't endorse drugs that have not been systematically tested". That is, Pharma isn't behind or beside the idea technique, treatment, etc., doesn't support some of the medical community itself, even though she already has scientific backing of proven and even safe.
    Here in Brazil we are in an economic and serious political crisis, some pharmacies high cost linked to the Brazilian Unified Health System are already having lack of Rebif 44a, for example.
    Interim President Temer has said it will review aid disease.
    The crisis is worrying and I see us off -label and a smart economic output to circumvent this turbulent time that the country and health in Brazil live.
    I wanted to have influence and power to bring part of Barts Team to create connections, promote lectures, conferences, joint studies between the country and the England to see if at least we could change the view of a neuro that is about it, and who knows (dreaming high) put pressure on the health system itself…

    Speaking of social media in this sense I am part of a group on the face facing the dissemination of scientific research and treatments around MS for whom has in Brazil and we played constantly the issue of off-label therapies as an effective and viable alternative. The group has about 200 people, sometimes I feel like a "wanting to swallow summer" …

  • Speaking of social media in this sense I am part of a group on the face facing the dissemination of scientific research and treatments around MS for whom has in Brazil and we played constantly the issue of off-label therapies as an effective and viable alternative. The group has about 200 people, sometimes I feel like a "wanting to swallow summer" …

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