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Will access to any new CFS drugs be limited to those who've tried GET/CBT?

Discussion in 'Action Alerts and Advocacy' started by Woolie, Aug 29, 2017.

  1. Woolie

    Woolie Senior Member

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    I've just been reading about the common practice of treatment triaging in medicine, where you start a patient off with the cheapest treatment that is approved for their condition, then only move up the scale of cost if that drug fails to give relief.

    It occurred to me that this might be another reason for fighting to remove treatments such as GET in particular from lists of recommended CFS treatments. Even if a drug is later approved for use in certain cases of CFS - like rituximab - patients may still be required to undergo GET first before they can qualify for it. And as we know, GET can have serious negative consequences.

    Perhaps someone here knows more about this treatment triaging system than me - at least as it operates in their country?
     
  2. RogerBlack

    RogerBlack Senior Member

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    GET/CBT is not a particularly inexpensive treatment, compared to a dose of a rituximab biosimilar, for example.
     
    GreyOwl likes this.
  3. Woolie

    Woolie Senior Member

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    But its not just about the dose cost. What about when you add in services: infusion, premeds, blood monitoring, responding to occasional adverse events, plus the need for more than one infusion? I cannot see how you could come off better with ritux.
     
  4. Alvin2

    Alvin2 Senior Member

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    If you prove a disease mechanism then the CBT/GET lobby will collapse. Nobody today requires dream analysis for Narcolepsy anymore becasue the psychological theory was smashed with the discovery of Orexin deficiency.
     
    Tally, snowathlete, slysaint and 6 others like this.
  5. Kati

    Kati Patient in training

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    hi @Woolie this is a very good question, especially in countries that have socialized health care systems but i suppose insurance companies could request that too.

    I wondered about this. I wondered whether drug trials would only be offered to patient completing the 10 week group therapy program that is in place right now.

    Personally i would think it is unethical to go that route.
     
    Last edited: Aug 30, 2017
  6. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Yes the CBT/GET lobby will collapse, but it wont collapse fast. There will be a long transition period. They are fighting to hang on even now. It takes many doctors ten to twenty years to wake up to changes in research, though some will be on board from day one.
     
  7. Alvin2

    Alvin2 Senior Member

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    Very true, they say it takes 30 years for new medical knowledge to become mainstream.
    That said a disease mechanism will speed things along, going back to narcolepsy it was only discovered in 2001(ish), change came in a few years.
    Without the mechanism it is a fight to the death because reality deniers are good at squawking loudly and lying with impunity...
     
    Invisible Woman likes this.
  8. Woolie

    Woolie Senior Member

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    @Alvin2, I wish I could share your confidence that GET will go the way of dream therapy. But I suspect it won't be that simple.

    Proponents of GET and CBT have been repositioning their treatments as "theory neutral" for years. The idea being promoted is that, irrespective of the mechanism that underlies CFS, GET/CBT may provide some level of symptomatic relief.

    I think this is the guise in which most doctors prescribe CBT and GET. They don't buy into the full underlying psychological theory, more than 'symptomatic relief irrespective of cause' type story.
     
  9. Sean

    Sean Senior Member

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    That will depend a lot on the broader political climate. A new government can usually change this stuff fairly quickly, if they wish to. Which is one reason why I think it is so important for UK patients to get talking to Corbyn Labour.
     
  10. NelliePledge

    NelliePledge plodder

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    I assume there will be some work done to identify whether people are likely to respond to the medication - subgroup?So if they are likely to respond then it will be difficult to put hurdles in place to prevent the subgroup accessing it. If the improvement rates of people taking the medication are pretty high again hard to justify a hurdle even based on the dodgy unreworked PACE report numbers which arent that impressive and have in any case been debunked. Nobody with severe ME should be prevented from acessing medication on that basis because the courses arent aimed at them. I agree it would be unethical to do this and I hope it would even be seen as such by the press and public.

    people doing the course are generally not working so it would be delaying potential health improvement which could possibly help people return to work/off benefits by around 3 months so there would be quite a cost to that delay
     
    Woolie likes this.
  11. Invisible Woman

    Invisible Woman Senior Member

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    I would love if you were right @NelliePledge but I don't think so....

    As far as I know people with conditions such as rheumatoid arthritis are having their access to drugs such as rituximab reconsidered on a regular basis. This is a disease with clear abnormalities and defined criteria before such drugs can be prescribed in the first place.

    On the other hand Ron Davis and his Stanford pals may help us. One of their little gadgets will hopefully be able to tell who will & will not benefit from a drug using just a small blood sample.

    Also the UCL team have been working with those lovely Norwegians to figure out how to tell likely responders to treatment.

    I think being able to tell in advance (assuming rituximab is found to be the way to go) who will benefit & who won't will strengthen the argument for likely responders to get treatment.

    Of course, if you are not a likely responder then....who knows?
     
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  12. Alvin2

    Alvin2 Senior Member

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    I agree that progress is not easy, if it were there would already be much funding and probably a disease mechanism by now :(
     
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  13. snowathlete

    snowathlete

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    I think it's a good question. I think we will have to fight for the drug. I think they will drag their feet (in the UK at least). I think the usual people will fight to try and keep GET and CBT as treatments for people who are milder and who have not had the disease long. I think it will be difficult to deny the treatment to those who have not had the other treatments because the evidence for them is crap and patients have a right to reject treatments they don't wish to have.

    I do think there has to be a bigger effort to show that GET is not safe. Those promoting GET are aware this is their weak spot too, they've massively increased their talk about how safe it is in the last year or two, but largely they are not challenged on it.

    Get rid of GET because it is not safe. If you have to have half a dozen sessions of bullshit CBT before you can access Rituximab, well it's a huge waste of taxpayers money and patient's time, but it appears less harmful than GET. We'll obviously have to fight against the trend of exercise being given under the guise of CBT as well.
     
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  14. NelliePledge

    NelliePledge plodder

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    i think it is unfortunately inevitable in austerity NHS that they will review ongoing treatments

    I would take that over our current situation at least they are actually on the medication to have it reviewed.

    I agree there is a big collective hurdle to get over to get rituximab on NHS assuming Norwich trial backs it up. Presuming that testing will have to be put in place that will show the people who can benefit. Also given that it wont be for a couple/few? years (not sure how quickly the trial will be set up and report and then how long to get through the bureacratic processes)there could well be progress in the meantime on tests for markers that demonstrate ME anomalies. If not while 2 day CPET has big issues as a way of proving you've got ME I guess people like me at the milder end people will be willing to undertake that if there is a medication on the other side of it.
     
    Woolie likes this.

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