Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS - Haukeland University Hospital

I've just checked out the fund's Facebook page and it's all in Norwegian! Is this a small charity with little fundraising experience? Translating their website into English is a lot of work, but surely the Facebook page should contain posts in two languages?

I'm sure they're doing their best, but perhaps this would be a good time to invest in marketing. Are Norwegian pwME aware that the charity probably reaches few international donors and that this could be accelerated?

The Justice for ME fundraiser in the UK has raised 10 times the amount in the same time and dara is more relevant for pwME globally.
 
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OrganicChilli said:
I'm sure they're doing their best, but perhaps this would be a good time to invest in marketing. Are Norwegian pwME aware that the charity probably reaches few international donors and that this could be accelerated?

The Justice for ME fundraiser in the UK has raised 10 times the amount in the same time and dara is more relevant for pwME globally.
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I agree, the Justice for ME campaign shows just how quickly funds could be raised with effective international marketing.

I think it is really important that we reach out to the organisers and attempt to persuade them of this. My energy is limited but I would be happy to help draft an English version of a message to be translated into Norwegian, or if we are successful in persuading them, some of the English language promotional materials (although this would of course be better done by someone with fundraising copywriting experience).
 
Just find it abit ironic that CFS patients who have the interest to donate an amount equivalent to Daratumumab might also want to use the money for their own Daratumumab treatments rather than fund someone else's Daratumamab. Let's hope some wealthy fellow donates and gets the sum done.
 
It doesn't occur to you that people cannot get Dara prescribed off label, do not want to risk side effects, cannot afford 20k for an experimental drug or are too severe to get preliminary blood tests for something that may not work?
 
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ryanc97 said:
Just find it abit ironic that CFS patients who have the interest to donate an amount equivalent to Daratumumab might also want to use the money for their own Daratumumab treatments rather than fund someone else's Daratumamab. Let's hope some wealthy fellow donates and gets the sum done.
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If I had the money, I would definitely rather fund the research so I could then choose whether to try it myself fully armed with as much info as possible. I also wouldn't trust any doctor willing to prescribe it to me at this point unless I was in this trial myself.
 
Yes, people that think of donating to a phase 2/3 study as being "you get treatment vs I get treatment" probably won't be donating, but I have hope that there are enough ME/CFS patients that are sensible enough to understand that this is not what is occuring and that understand that the point of such a study is to deliver answers that don't exist without it.
 
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ryanc97 said:
Just find it abit ironic that CFS patients who have the interest to donate an amount equivalent to Daratumumab might also want to use the money for their own Daratumumab treatments rather than fund someone else's Daratumamab. Let's hope some wealthy fellow donates and gets the sum done.
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If the trial is successful, insurance may ultimately cover it. Many patients have no hope of trying it if insurance doesn’t get on board, so if finances are the concern, a trial proving it works is the best possible outcome.

(Speaking from a US perspective. I don’t know how coverage works elsewhere.)
 
Yeah. I think the situation of
(1) Being wealthy enough to envision off label dara
(2) Living somewhere where that’s even possible
(3) Have enough functioning to travel to clinics to get multiple injections and blood tests and all that hassle, and be able to withstand side effects
(4) Be willing to take the significant risks associated.
(5) Be okay with the fact we don’t even know it actually helps yet.

Is rather small.

I’m sure it exists. But I don’t think it’s too much of a concern.

But I share your tiny hope that some random well off fellow singlehandedly funds the rest of the trial @ryanc97 ;)
 
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ryanc97 said:
Sure, it depends on your risk tolerance I guess.
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Right now we have absolutely no reliable evidence that Daratumumab works, and the drug is very expensive. If the price drops next year after the patent expires, and the phase 2 is positive with similar remission level improvements, then you might see a good deal more people trying to get it off label. That's still a risk but one a good deal more people would be willing to take.
 
V.R.T. said:
Ah I was under the impression from previous discussions it was all forms of it, thanks for correcting.
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@Utsikt said a biosimilar is already in the works. This is probably what you were referring to.

The patent for Dara is apparently set to expire next year. A phase 3 for a biosimilar is planned by Celltrion. Which might explain why J&J doesn’t want to spend any money on it.

https://www.biospectrumasia.com/analysis/25/25658/mitigating-patent-cliff-fallout.html
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And this was just announced yesterday! Unfortunately, it will take 2 years...

Celltrion Enters Phase 3 European Trial for Darzalex Biosimilar

Celltrion announced on Sept. 1 that it has received trial approval from the European Medicines Agency (EMA) for CT-P44, its biosimilar to Janssen's Darzalex, paving the way for a global Phase 3 clinical trial.

The trial will enroll 486 patients with relapsed or refractory multiple myeloma and will compare the efficacy and safety of CT-P44 against the original subcutaneous injection Darzalex Faspro in combination with lenalidomide and dexamethasone. The two-year study will follow global regulatory standards, including double-blind, randomized, active-controlled, and parallel-group design.
 
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