Well, as you pointed out in a prior thread, we know there are many potentially very dangerous drugs being used off label, even for MS, so that's nothing new.

http://neurotalk.psychcentral.com/sh...hlight=Tysabri

I don't see that this will affect the current trial results in any way, since he is getting it off-label (and not as a trial participant).

I don't like that he got around the TOUCH program, but EVERYONE outside the USA (like in Canada) is getting Tysabri without the TOUCH program in place in their countries. NO!!! I don't like that at all . . . welcome to MY issue.

Cherie

Like Paul Newman, who died at age 83 of lung cancer . . . wonder if they blamed his smoking 30 yrs ago for the "cause of death"? Skewed statistics are common.

In this case, there is no way they would tie Tysabri into this guy's "cause of death". In fact, I doubt they will be able to attribute ANY of the deaths that occur in even the trials to Tysabri . . . these people are dying anyway aren't they, and the hope is that Tysabri might STOP that?

Cherie

Is it only certain infusion centers that are charging this much, Vic?

If so, why are they charging so much more then anywhere else? Are these two infusion centers owned by the neuro practice, or ?

What makes the difference in what each of them charge . . . profit?

Can you not go to yet another infusion center?

This is too bad.

Cherie

Cherie,

I have contacted all of the infusion centers within 100 miles of my home and have discussed infusion costs with dozens of hospital billing departments. Even with my insurance, the costs are about the same - very high.

The costs for those infusion centers that are not within my insurance plan are 50% higher, and so they were not even considered.

The amazing thing is that if I had absolutely no money or assets, the entire treatment would be free (both the Tysabri and the infusion center costs combined).

It is clear that only the middle class gets squeezed when it comes to medical costs.

At least I still have a pulse, a good life, and a sense of humor!

-Vic

Hi All,

I went for infusion #2 today and after a few UNsuccesful tries they FINALLY got a vein to use on me, they sugessted I get a port........Duh, that is what I wanted from the start......BUT after the whole dose of Ty went in I developed a slight red blotchyness on my arms and stomach.......they gave me IV benedryl and took a vile of blood from me to check for antibodies.

I would think that I should be OK for Tysabri in the future because it was such a slight reaction BUT the blood work will tell the story won't it? if I stay on it or not....Is this kind of a COMMON thing?

This is IT for me as far a the CRAB drugs go, I have tried them all, ty is my last hope........

Has anyone else had this problem?

Thanks

Joe

Joe

See my post on your thread.

I haven't posted in a while, but wanted to give everyone an update on Chris.

Tysabri #12 and new MRI's

No new leisons!!!!!!!!!!!!!!!!

I understand now why his neuro is so concerned after reading the report

Approximately 100 discrete and confluent T2 lesions - no definite new lesions

Spine:

T2 lesions - too numerous a nd too confluent to count lesions from C2 to T2 no definite new lesions

Extensive T2 spinal cord lesions - despite the extensive demyelination the spical cord size is normal

Scary, but at least right now we have stopped the progression

Stopping progression is HUUUUGE !!!!

YEAH !!!


-Vic

Vic

I just caught up on your posting. This is just an absolute disgrace. Are you not eligible for VA benefits? Just curious...

As for the issue of Tysabri and cancer/MM treatment, if memory serves----

I don't think I have the link anymore, maybe I do, but Tysabri was originally formulated for cancer treatment. The original patent was filed for cancer treatment. It was thought they could get a clinical trial approved quicker for MS than cancer so the MS protocol was presented to the FDA and the SBLA was applied for rather than one for cancer. The patent for cancer was held in abeyance until recently.

I FINALLY got a copy of a bill from the hospital infusion center to the insurance company.

After reading it thoroughly, I called Anthem/BCBS. I had other things to talk to them about, but I gave them a heads up on that bill.

$6500.00+ for the vial of Tysabri.

The actual infusion costs were only $1200.00 and that was with all supplies and everything! One infusion costs $7700.00+. The price has gone up every month since I started.

I told the woman I spoke with that even though I am not paying for this because the insurance picks it all up under my major medical, and that the drug works just as it is supposed to, I am opposed to my policy cap being used up by overpricing by the infusion center. I told her the wholesale cost of the drug and she was not happy with the difference. I suggested that perhaps the insurance company's specialty pharmacy could get a MUCH better deal and maybe someone should look into it.

I have a case # now, because of all the problems I am having, and I will be getting an answer on the drug cost (while all my other problems are being corrected and I get my refund for bills paid since 1992! Thanks VIC!!)