Philadelphia Tysabri Conf.

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby better2gether » Wed Feb 02, 2005 7:20 am

Harry,

This data was taken from the two trials of one year data that was used for FDA approval.
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Re: eric et al

Postby HarryZ » Wed Feb 02, 2005 7:27 am

Meadow,

The safety and side effect profile of Tysabri is unmatched by any MS drug, and even by few drugs anywhere for any indication. I do not know why there is an attempt to discredit Tysabri on this thread, but you can probably make your own guesses.


Why are you inferring that trying to obtain accurate information about two supposed deaths due to Tysabri infusion is an attempt to discredit the drug? We know that Biogen certainly hasn't said anything about this and the readers here and on other MS forums are trying to determine if this is indeed true or simply a bad, false rumor started by Serono. If the rumor is false, shame on Serono and/or others who have started it. If it is true, shame on Biogen for not advising the MS world.

Harry
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Postby HarryZ » Wed Feb 02, 2005 7:41 am

Eric,

BTW, does anyone know how the price for Tysabri compares to that for other monoclonal antibodies? Are we getting fleeced again?


I don't know the price of any other monoclonal antibodies but have been reading on another MS Forum that insurance companies are being billed $ 4,000.00 for an infusion of Tysabri! Originally, we were told the wholesale price of Tysabri was $ 1800.00 but that did not include the infusion cost or mark-up on the drug. The person who checked into the pricing for herself was adamant about the $4000.00 price tag so at this point, I am believing her information was accurate.

Have any other readers here been able to obtain a price on Tysabri?

Harry
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Postby MeadowStream » Wed Feb 02, 2005 7:56 am

You are deliberately trying to sell a rumour and play it off as though others are driving the bus. It is my hope that the legitimacy of this forum does not also legitimize your rumour-mongering.
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Postby DenverCO » Wed Feb 02, 2005 7:58 am

Quote:
"What you are getting here is a couple of people yelling "Fire" in a crowded theater and excusing themselves because they contend that someone whispered it (not sure who or can't say) nearby."

Right on, Meadow.
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Tysabri Prietag

Postby DenverCO » Wed Feb 02, 2005 8:13 am

Harry,

I went outside of my insurance network and privately paid for my first infusion. It was $2200 for the drug and the cost of the infusion. I believe that the drug portion of the tab was around $1875-$1900.

I suspect that the person on the other forum who states that her insurance company is going to charge $4000 for Tysabri is misunderstanding something. Maybe her insurance company wants to do fresh MRIs in conjunction with it. Who knows.

Let's get a grip on our reaction to hearsay!

DenverCO
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Re: Harry

Postby HarryZ » Wed Feb 02, 2005 8:16 am

Meadow,

MeadowStream wrote:You are deliberately trying to sell a rumour and play it off as though others are driving the bus. It is my hope that the legitimacy of this forum does not also legitimize your rumour-mongering


Please go back and read the messages on this thread. I was not the person who brought to our attention the information about the two patients who died! I knew nothing about this until I read about it here and stated so. I have also urged caution about this rumor and asked others to try and obtain accurate information about it.

And now you accuse me of "rumor mongering"! Please Meadow, re-think your understanding of what is being written.

Harry
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Postby Ptwo » Wed Feb 02, 2005 8:57 am

From my perspective I think that people should just be cautious and wait till the full 2 years of the phase III data is released. There are thousands of people who are going ahead and starting the drug right away and so far we've heard of no major complications which is fantastic. I've read nothing but good things from the people who are on it.

Was it the right thing to do to pass on information from a very reliable ms nurse who has ms herself and I've known on a couple of msboards for years? For some people I guess not. To me it's just another piece of info and one I take seriously.

Peter
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Re: Tysabri Prietag

Postby HarryZ » Wed Feb 02, 2005 9:15 am

Denver,

Let's get a grip on our reaction to hearsay!


I just noticed a thread in this section that was started by Flora 68, the same person who wrote on another MS forum about the cost of Tysabri from her investigation. It is titled "Anyone else's neuro billing $ 4K for Tysabri"?

I trust this will remove your "hearsay" concern :D

Harry
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Postby HarryZ » Wed Feb 02, 2005 9:28 am

Peter,

Was it the right thing to do to pass on information from a very reliable ms nurse who has ms herself and I've known on a couple of msboards for years? For some people I guess not. To me it's just another piece of info and one I take seriously.


There was absolutely nothing wrong with you passing information on about this situation. I, like you, trust the person you are referring to and know that she would not knowingly give false information about MS or anything related to it. I also take the info seriously and want to get to the bottom of it. Unfortunately there are some readers who equate this kind of information as being "negative" to Tysabri. That's their opinion and everyone is entitled to their opinion. But when they start accusing others of "rumor mongering" or "fire crying" because they don't like what they read, I find that unreasonable.

Harry
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Postby Arron » Wed Feb 02, 2005 11:07 am

To clear up at least one part of this thread, the $4000 price tag quoted by others is not the price charged by Biogen/Elan. That $4000 is inclusive of the Neurologist's infusion fee. From what we've seen, Tysabri is purportedly billed to the insurance around 1800-2200 for the drug itself.

Our volunteer who was to help run the communications with Elan has been too busy; I will try and find time to do it myself as this is a pernicious rumor at this point and could be unnecessarily frightening a lot of people. On the other hand, if it's true, people have a right to know. For people taking Tysabri now, note that obviously precautions are being taken to prevent any serious issues (specifically, monitoring patients is a required portion of the infusion).
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby Arron » Wed Feb 02, 2005 11:11 am

Here is the official number to call for any questions about Tysabri... it might be interesting for a few people to call and post the company's response to this question:

"If you have questions or would like to learn more about TYSABRI, please call us [BiogenIdec/Elan] at 1-800-456-2255 (Monday through Friday, 8:30 AM-8:00 PM ET)."
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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DenverCO (another LONG one from flora)

Postby flora68 » Wed Feb 02, 2005 11:53 am

I suspect that the person on the other forum who states that her insurance company is going to charge $4000 for Tysabri is misunderstanding something. Maybe her insurance company wants to do fresh MRIs in conjunction with it. Who knows.

Let's get a grip on our reaction to hearsay!

DenverCO



Uh, DenverCO, old buddy old pal.... now just hold your horses a minute.

(Wow... How can I say this without breaking my rule about never, ever getting in the middle of p*ssing matches, online or off?.....But in the righteous interests of truth, accuracy, and, moreover, my own credibility and ego ( ie vanity) :roll: , I feel compelled to wade on in to these murky waters to try to clarify something, so here goes nothin'...)

I am the person you were referring to above. And I confess that I certainly do forget or even "misunderstand" things pretty often. But in my own defense, I'm almost always the first to suspect (and admit) it when I am wrong or may be wrong about something.

But it just happens that I'm not mistaken or "misunderstanding" regarding this particular fact:

My neurologist's office planned to bill my insurance company no less than $4,000.00 for each and every single Tysabri infusion.

No kidding, there's absolutely no confusion, no "misunderstanding". It really is $4K for each and every single infusion.

And, no, MRI's are definitely not included! $4,000 is billed for each infusion of Tysabri, period.

And not only have I worked in a physician's office myself since the Reagan Administration, therefore definitely not "misunderstanding" the details of my own medical care and the insurance reimbursement thereof, but I made my neuro's insurance nurse repeat the $4,000.00 figure over and over.

And you'd better believe I argued and argued about how I know it costs them $1,800.00 per dose, not anywhere near $4,000, because, for one thing, the neuro had told me this himself!

I was told "well, he was wrong."

Finally I told them to keep their Tysabri, that I didn't want it. (Should have suggested where they could put it.... :wink: )

I know. I couldn't believe it either! In fact, a week or so before I was given this stunning news from my neuro's office, I also couldn't believe it when another poster said that her neurologist's office had told her one dose of Tysabri would be $4,000.00 per infusion.

I mean, I opened my big, incredulous mouth even bigger than you just did, and stuck my big old foot right in it :P .

Here's her post

Ok,

So my best friend, just heard from her dr's office today, and they are telling her that the tysabri treatments are $4000.00 a month, now what is going on with that? Also, they are wanting her to go to the pharmacy and pick it up herself, and another member advised us not to do that, because she would be financially responsible.

so she doesn't know what to do. I told her maybe it was because the insurance companies usually discount the amount, that they are starting high, then maybe it would finally come down to 1800.00 amonth, like we had been hearing.

What do you guys think?

Peggy




And here, unfortunately, was my smart*ss retort:


Is your friend actually seeing a real doctor? It doesn't sound like it.
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Boy, was that uppity of me! For all I know, her friend might be seeing my doctor! (Except that my doctor's office didn't tell me to go pick up the Tysabri at the pharmacy....)

This is like instant karma for such a haughty statement, considering that I am now having the same problems convincing you.....

But since $4K-per infusion is truly outrageous and very, very hard-to-believe, if you still doubt it, I'll be glad to privately message you with my doctor's office phone number and enough of my insurance information so that you can call and enquire about costs as if you were a prospective patient.

And don't worry, this wouldn't violate HIPPA. (And this is an actual HIPPA Compliance Officer speaking!)

BTW, when I was on Avonex, under exactly the same insurance policy with no changes, I paid $30.00 for 4 weeks worth of Avonex. My insurance paid all of the rest.

On Copaxone, ditto. Same insurance, and exactly the same tiny copay of $30 for 30 day's worth. It was wonderful.

I didn't think it'd be that cheap for Tysabri, but hanging an IV for $2,200.00 over the cost of the medication is just too much for me to participate in.

I hope Peggy's friend has options. Personally, I'm turning to LDN, which was what I wanted anyway.
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Postby Arron » Wed Feb 02, 2005 12:28 pm

It is pretty amazing that the doctor is trying to make over 100% profit for the act of providing an hour-long infusion + hour-long observation... ! That neuro is likely not going to be very popular with the Tysabri patients, and hopefully market forces will bring him/her down to Earth.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby HarryZ » Wed Feb 02, 2005 7:27 pm

Arron,

Arron wrote:It is pretty amazing that the doctor is trying to make over 100% profit for the act of providing an hour-long infusion + hour-long observation... ! That neuro is likely not going to be very popular with the Tysabri patients, and hopefully market forces will bring him/her down to Earth.


I asked my wife, who worked in hospitals for many years, what kind of cost would be involved for a person to come in and have an IV infusion over a 2 hour period. She told me that in Canada, the cost could likely be around the $ 500.00 mark....in the US, about $ 1000.00 Now that's in the hospital setting. If you have this done in a special clinic, it would likely be higher.

So taking the wholesale cost of Tysabri and adding $ 1000.00, that now places the hospital infusion at about $ 2800.00 Now add the mark-up on the drug (don't know what that would be but general business practice is at least 30% with medical products being higher) and then move the procedure to a special private clinic....it starts to get close to $ 4000.00!!!

Of course these figures are speculative but not necessarily that far off. And we now know that the $4000.00 figure has been quoted from two different sources. Hmmm!!

I guess it may depend on just where you have the procedure done and how much of a profit the particular place wants to make.

Harry
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