Norwegian TV: Patients pay out of pocket for private Rituximab treatment

[deleder2k]

@frujo, welcome. Where do you live? It seems that treatment at dr. Kogelnik is around 2.5x times more expensive.

 

[frujo]

Thank you I live in Norway so I am going to Kolibri.

 

[frujo]

With KDM i meant Kenny de Meirleir. Thats a complete other type of treatment.

 

[deleder2k]

I don't see why you would go to him. I haven't been visiting him myself, but many on the forum have. My impression is that he has a relaxed relationship with science based medicine.

Remember that Rituximab is the only drug who have shown an effect in treating ME (and perhaps Ampligen).

 

[frujo]

Yes I agree! The more I read I get the same impression. I have already made an appointment with KDM, but I think I will re-cancel. I have today made an appointment with Kolibri also. But I am still a bit unsure. So it is really good to get som input from more people.

Have you tried Rituximab?

 

[deleder2k]

I am in the study. Can't say more about that

I would never go to KDM. I think he is engaged in non-scientific experimental treatment of patients which could be dangerous. It also costs a fortune. Given the fact that he hasn't published a study on a specific treatment that works I don't see why one would spend so much seeing him.

 

[frujo]

Ok! Best of luck! I appreciate you comments. (Y)

 

[deleder2k]

I believed they was going to be stopped anytime from doing this by the Health directory or was they cleared from the case?

I think the case is still with the County Medical Officer. Dr. Øgreid, the oncologist at Kolibri says he is confident and that all all rules have been followed.

 

[frujo]

Yes it is, I spoke with them today.

 

[jimells]

@frujo welcome to the forum. If you get the rituximab treatment, patients here from all over the world will be eager to hear your experience, while cheering you on. Well, even if you don't get the rituximab, we'll still cheer you on.

 

[Asa]

What about medical tourism? I am not up-to-date but am aware, for example, that (beautiful - land and people ) Puerto Rico is (sadly) experiencing serious financial problems. And a quick google search pulled up info re Puerto Rico making a move toward medical tourism.

I could be wrong but I thought SAS was running some cheap(er) flights there for a while. Maybe not still though (and maybe they were never as cheap as needed). And from the Eastern US especially, Puerto Rico might be realistic for some/many. (Far cheaper than California, I imagine.)

Could any of the ME associations approach doctors in Puerto Rico about rituximab for ME?? What about Eastern Europe?

And this below too:

"Finding a cure for cancer has always been a goal for many health care professionals. Many have tried, but few have made as much of a stride as Dr. Antonio Grillo-López. He, along with several colleagues, pioneered a new drug named rituximab... Dr. Grillo-López has his roots in Puerto Rico. Growing up, he received both his Bachelor of Science and Doctor of Medicine degrees at the University of Puerto Rico, San Juan..."
https://en.wikibooks.org/wiki/Structural_Biochemistry/Rituximab

Anyone know if Grillo-Lopez is following Rituximab for ME?? I think we should contact Dr. Grillo-Lopez! Thoughts??

EDIT:

"Dr. Grillo-López accredits much of his success to the 1908 Nobel Prize winner Paul Ehrlich. The late Paul Ehrlich was a German scientist who had experience in the fields of hematology, the study of the physiology of blood, and immunology."

 

[Scarecrow]

I am in the study. Can't say more about that

Next year, after the final patient enrolled gets their last treatment, are you allowed to say whether or not you have improved or are you sworn to secrecy until publication?

 

[deleder2k]

Next year, after the final patient enrolled gets their last treatment, are you allowed to say whether or not you have improved or are you sworn to secrecy until publication?

Hm... I don't really know. I guess I can say what I want when all patients have completed follow-up.

 

[Scarecrow]

Hm... I don't really know. I guess I can say what I want when all patients have completed follow-up.

Thanks and sorry, yes, I meant at follow up, even though I knew I was typing "treatment".

 

[BurnA]

What about medical tourism?

The cost of the drug is a big factor in the overall price so I don't think it would be substantially cheaper in some countries.

Could any of the ME associations approach doctors in Puerto Rico about rituximab for ME??

Remember RTX is not approved for the treatment of ME. It would be irresponsible for an ME charity to advocate this.

 

[deleder2k]

The cost of the drug is a big factor in the overall price so I don't think it would be substantially cheaper in some countries.

I think dr. Kogelnik takes 2x the price for RTX and almost 3x the price compared to Kolibri in Norway. I do think the price list price for Rituximab is higher in the states compared to Europe. I would guess that the price of Rituximab is the same in the US and Puerto Rico.

Roche sells a version of Rituximab in India which is extremely cheap. Check this thread out: http://forums.phoenixrising.me/index.php?threads/rituximab-in-india.38071/

A summary of an old article in the Wall Street Journal (2012).



I know Reditux has been widely available in India for some time, but I didn't know that Roche had their own version in the market.


The drug is called Ikgdar and is made by Roche under the company name Emcure Pharmaceuticals Ltd.

I found some prices online:

It looks like they call it Ristova in Pakistan. Here is the brochure: http://www.roche.com.pk/content/dam/ROPEGRA/Ristova/Ristova-ra-cmi_new (1).pdf

Looks like the price is 37,500 indian rupee, or $585/£376 for 10 mg x 1 mL x 50ml.

It looks like the price in the USA is around $2840 for the same amount of Rituxan/Rituximab (wholesale). Could this be right? I know dr. Kogelnik charges around $6800 per infusion for the drug, whether it is 500mg/1g. They also charge $2000 for costs related to the infusion.

And has anyone received treatment for ME with Rituximab in India? I am very skeptical about untested biosimilars, but this product comes straight from Roche.

 

[Kati]

I think dr. Kogelnik takes 2x the price for RTX and almost 3x the price compared to Kolibri in Norway. I do think the price list price for Rituximab is higher in the states compared to Europe. I would guess that the price of Rituximab is the same in the US and Puerto Rico.

Roche sells a version of Rituximab in India which is extremely cheap. Check this thread out: http://forums.phoenixrising.me/index.php?threads/rituximab-in-india.38071/

Dr K doesn't make money on infusing Rituximab. The cost of drugs differs in each countries. US being a very expensive place to buy medicines. Each country negociate with drug companies to purchase them.

 

[deleder2k]

@Kati, that is what I was trying to say, but I see what I wrote was a mess. I think I need to go to bed

But nevertheless, if it correct that he charges $2840 per infusion - regardless of the length of the infusion it is rather extreme. At Kolibri they do infusions rather quickly. Maintenance infusions can be done in 90 minutes. Charging $2,840 for that makes no sense to me.

 

[Asa]

Remember RTX is not approved for the treatment of ME. It would be irresponsible for an ME charity to advocate this.

Not sure I understand. Re irresponsible, is that a personal opinion and/or is it also how the world works (the world's opinion), so to speak? Sigh...

If doctors and patients are within their legal rights to administer/use treatment-X, and a high percentage of the patient population wants an opportunity to be evaluated for use of treatment-X, shouldn't organizations representing the community help people access an opportunity to be evaluated? Supply/demand?

Otherwise, it's death by gov bureaucracy... Government buildings should just all be stamped out in "death star" architecture... (End mini-rant. Edit: Except for a few gov buildings in Norway apparently! )

"Dr. Antonio Grillo-López likens them [the FDA] to the pace of snails and considers them to be 'the single most important obstacle to the timely development and approval of anti-cancer agents.' He cites examples such as the five-month-review to simply approve the proposed name for rituximab..."
https://en.wikibooks.org/wiki/Structural_Biochemistry/Rituximab

 

[BurnA]

Not sure I understand. Re irresponsible, is that a personal opinion and/or is it also how the world works (the world's opinion), so to speak? Sigh...

It's how the world works.

If doctors and patients are within their legal rights to administer/use treatment-X, and a high percentage of the patient population wants an opportunity to be evaluated for use of treatment-X, shouldn't organizations representing the community help people access an opportunity to be evaluated? Supply/demand?

Organisations who represent the community want what's best for patients. This means relying on approved medication.

Otherwise, it's death by gov bureaucracy... Government buildings should just all be stamped out in "death star" architecture... (End mini-rant.)


"Dr. Antonio Grillo-López likens them [the FDA] to the pace of snails and considers them to be 'the single most important obstacle to the timely development and approval of anti-cancer agents.' He cites examples such as the five-month-review to simply approve the proposed name for rituximab..."
https://en.wikibooks.org/wiki/Structural_Biochemistry/Rituximab

What's his opinion on thalidomide ?