News from The Netherlands
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They’re mixing up two different things — govt reimbursement and availability. Approved medications which are on patent are available — the government can agree to reimburse them. If they cared at all about ME/CFS patients.
V.R.T.
Senior Member (Voting Rights)
Which is really disturbing because it means that they realise that MECFS is not psychosomatic - because otherwise none of the possible treatments would work - but still stigmatise us and do not want to help us.
I can't help but think something odd has gone on behind the scenes here.
I'm not quite sure. I would not be surprised if they still think that it is psychosomatic (as the majority of people do), but for political reasons don't say this anymore. It would be interesting to know how this policy of only trialling medications that have run out of patent came to place but it's possible that it is one of these abstruse political compromises one often sees in life that make no logical sense.
V.R.T.
Senior Member (Voting Rights)
Yeah this is probably it. But their public position suggests a torturous mental contortionism on the part of funders.
Even if they think its psychosomatic, surely it doesnt matter what drugs are researched because none of them will ever work better than placebo! So there is no need to make this stipulation. This decision makes no sense from any position.
It certainly does.
I guess it might matter in terms of what drugs are more likely to cause harm and at the same time are more likely to be trialled, for example harsher drugs out of patent might be less likely to be trialled because one would have expected circumstantial evidence by now. In short, I find it possible that they don't want things like Daratumumab (where it doesn't matter too much because it is almost out of patent and biosimilars already exist) or newer biologics trialled, but can still live with some trials of things we anyways don't think are likely to work usefully or stuff like SSRIs (which are all out of patent).
At least that is my current interpretation, which needn't be correct. It needn't make logical sense, just politically. If you'd ask Knoop whether he'd prefer a LDN trial or a Daratumumab trial, if I'd have to venture an uneducated guess I would presume he'd opt for a LDN trial.
Of course it doesn't really make sense that things are different for Long-Covid, but things often don't make much sense.
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rvallee
Senior Member (Voting Rights)
Plus if anything actually worked, a lot of patients would pay the drugs themselves, unless the price is so excessive only multimillionaires can afford it. And even then. This is literally what the AIDS buyers' clubs were all about! There is precedent for this! And it's not the distant past, there are still a lot of people alive who saw this happen, it was a major event. The patient community would do most of the heavy lifting anyway, as the institutions of medicine are slow and indifferent.
But this is what the hyper-local fixation in everything health care leads to, they literally don't even consider for a second that this is a problem that affects tens of millions all over the world, and that things can happen elsewhere that can have indirect effects on what would unfold if an effective treatment were found. This is a big world out there, with lots of people and things happening, but they never seem to think in those terms. They think locally and refuse to act.
I remain absolutely baffled at the near complete absence of international collaboration in medical research, especially where it's the most needed. Every single expert discipline where basic research is involved does that, precisely to benefit from a larger pool of talent and to leverage economies of scale.
But in health care everything is thought of in terms of what can be done at this one local clinic here and now for a dozen patients, with zero conception of a broader universe even existing. I don't get it. It's like a system built to perfection at being inefficient and wasteful.
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Tree
Senior Member (Voting Rights)
Even if a government says, that is very expensive. Why is it always a short-term one-sided part of the coin.
If a government chooses to look at it as a business model (which I do not agree with) than they also should include part 2; what are the costs of not treating; so leaving tens of thousands of people ill long term.
That is the dishonesty of this presentation.
Jonathan Edwards
Senior Member (Voting Rights)
You can bet your shirt on it.