Innovation Costs, Pharmaceutical Repurposing Gouges?


Dimethyl fumarate (Tecfidera) a slow releases repurposed variant of dimethyl fumarate (fumiderm) that was first used in psoriasis. Rather than get a once a day variant as the patent ran out, another new variant has been approved in the USA and this has been called vumerity and the active compound is diroximel fumarate, which is taken twice a day

Diroximel fumarate is less likely to cause gastrointestinal side effects, but is as effective as DMF. This is not surprising as the active metabolite of DMF is monmethyl fumarate and this is also the metabolite of diroximel fumarate. The mechanism by which this drug leads to less gastrointestinal effects is purported to be due to its lack of a methanol leaving group in its chemical structure, and substitution with inert 2-hydroxyethyl succinimide

Ditoximel is approved to treat relapsing MS forms, including clinically isolated syndrome, relapsing MS and active secondary progressive MS.

There have been complaints about the costs in the USA, but this is the environment that the US government has allowed to develop. They have allowed the cash cow to develop and MS pharma has created herds of them.

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  • It’s shocking the cost the MS drugs are priced in the US. On reddit there was one American who said their bill for Ocrevus was charged at over $200k!!
    If the worst case scenario happens in the UK and Trump got his way (as the media reports) and we had to renegotiate how we pay for drugs, are we protected under existing contracts / agreements with some of the US pharma companies? Eg. The NHS secured a price for x amount of years?

  • Somebody has to pay for Biogen’s Alzheimer’s, PSP, PD and other neurodegenerative pipeline. Why not pwMS and their insurance companies?

  • Actually in the US almost NOBODY knows the cost of these specialty drugs.
    This is part of the problem in transparency.
    The BOOK price is readily available.
    But the ACTUAL price insurers and middlemen actually pay the drug maker and licensing companies is one of the most tightly guarded secrets.

    It is probably fair to say that the big insurers are paying a small fraction of the book price. Is it 50% is it 33% who knows ?

    Another issue is that there is a stigma associated with lower priced drugs, that perhaps they are less effective than the most expensive drugs. So there is BOOK pricing imbalance here as well.

    But what really needs to be made more transparent is which drugs ACTUALLY WORK ?
    Probably some of them are really no better than placebo. The trial structure was biased.
    Some of them are probably no better than exercise, diet, stress relief and good sleep patterns.
    Some of them might actually work.

    But which is which ? Do they just slow MRI signs and relapses ? Or do they reduce the progress of EDSS or real life impacts of decline over time? Who is keeping score? Where is this data ?

  • The Pharma investment strategy is to pass their investment risks from new research and drug development on patients and national insurances, by getting “pre-paid”, rather than taking those investment risks on the company budget. What they do is create an environment of “shared benefits” to blur the fact that they are actually one of the most grossing capitalistic companies of our times and by far the most cruel ones. That the “free economy” at its best.

  • Hi Profs, Drs & fellow MSers – I was diagnosed in 2016, prior to that 1 year CIS & prior to that who knows – but it would have been good to find out more about me, to see if there were any indications that MS was active years before all the above! I’m following the comments with hope, prayers (in my case) & willing to ask, upset & offend! Why can we not get straightforward answers in line with the above comments about these DMTs? I feel blessed in some ways that there are treatments available but why are there so many questions still yet to be answered. Choices, cost, availability, efficacy, monitoring (so important but given very little emphasis on how important) & most concerning of all do they work significantly enough, once the side effects & possible devastating reactions, to bear in mind, do they give a better Qol to the patient? If you live in certain part of the County you have access to some drugs other parts of Europe, some other options. Surely, by now over the years this can be co-ordinated, delivered (by that I mean, HCPs advise the patient of all their options properly) & we should at the very least be given the support, urgency, time to discuss all the above, carers support with info & all the same drug options. We are not in a war zone in the UK (or Europe) or so stupid that we don’t worry, aren’t bothered or not living everyday with hope that whilst all this info seems like a Pharma, Government, Hospital Administration game. We as patients do not have the time. Time is not necessarily on our side. We might need more support with help with our lifestyles (diet, exercise etc) as these are given a lot of lip service & not enough substance behind all of these non-treatment pathways. Which diet (no one knows) which exercise (if you have severe spascity and possibly other health issues) no one is helping, which meds to help you sleep at night – or which tabs works well which are not addictive, might help in terms of, etc, etc.

    I draw hope from conversations you guys have with all the therapies available, but if one is dangerously harming our bodies and one is the best DMT but you can’t get it (due to aforementioned) or you’re not in the right bracket, stage or your MRI isn’t correlating to your symptoms & no one is listening, what do you do but get stressed, stressed & more stressed. Which has a knock-on effect on your MS, health & well being. Staying mind strong, is a challenge for anyone living in the UK NHS system at the moment. You have to manage your own health, appointments, chase-ups, drug lists, pharmacy issues, hospital appointments, vaccinations, what do I need to ask, which is the most important with the time given, how can I manage if the waiting time is long, what if I’m forgotten, missed or not given the empathy or understanding that so many of the rushed appointments make you feel – am I confused, upset & although sometimes okay, you still wish you had had more time to go through your invisible symptoms!

    I’m fairly okay age (ish) at the mo! How does someone cope who is younger & completely overwhelmed or of an age when your mind may not be as sharp – do you simply struggle through!

    Here’s a thought – I was admitted into hospital earlier this – with raging backache (ceased muscle spasms) & consequently found that I have bulging discs (the pain was even worse than my MS pain). Whilst in A&E I was given and before the proper checks were carried out, Codeine, Morphine & Paracetamol with regular checks I might add, to see if I need any more pain relief at timely intervals. How can you monitor someone’s pain, when they are ‘walking on clouds’ – this is the only way I can describe how I felt after the drugs took effect! I then thought to myself, that everyone meant well & want me to be free from pain, albeit quickly! How can they then ask me to assess my pain & where does it hurt when a pin (looked like a large nail) was used to measure my sensation & feeling!

    It all goes without saying – the staff, treatments, medications, scientific teams, nurses are all in it together & ultimately want to help people with finding a cure & helping then lead a better QOL. Why don’t they remember how & why it was they went into medicine – stop & remember you are dealing with a person, possibly very fragile (if you’re in hospital) & that ideally, you want to help make this person better. If you’re unable to do this, stop question what has gone wrong, help that person, explain & try and make a change. If changing the way you help a patient by empowering them to help themselves, it all helps, even a little change. If clinics aren’t working, say so, if someone isn’t doing their job properly, say so (I know in my working world that happens and you’re accountable) If someone needs to be given more time to digest info – follow up. No one follows up anymore…

By MouseDoctor



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