Hey Vic:

Good luck with the Rebif.

And thanks again for all your feedback and advice on this board.
Don't be stranger now.

JJ & LL

Infusion # 19 today!

Everything went well, no problems, no concerns. It was so smooth I was out of there in 2.5 hours!

The nurse had everything waiting for me when I got there. The pharmacist came in right after the Q&A. I talked to the nurse about the pinpoint itchies and my quest to find out what is causing them. We did the rotation of the bag several times during the infusion. I didn't do the benadry or the tylenol since they didn't do anything last time.

NO ITCHIES TODAY!

We are going to try it again next month, just to make sure that is what it was (the drug and the sodium becoming separated during the hour infusion) but it all went well today.

No relapses since I started, nothing but gravy since May 25, 2007!:)

Maybe you're allergic to the Benadryl? :confused:

Anyway, I'm glad it went well this time! :) :hug:

Lauren,

I sent the information that you asked about via e-mail.

Thanks,

-Vic

Lauren,

Thanks again for the help.

MS Active Source is taking a very close look at my insurance policy and what I have paid thus far for both Tysabri and infusions.

It appears that I have been overcharged thousands and already met my deductable (months ago, regardless of what my insurance company has said).

Your help is appreciated greatly

-Vic

I learned a new phrase relative to insurance billing: "balance billing". There are a bunch of sites on the web that describe it, and it seems that it has played a significant roll in the billing that I have received. Today there will be a conference call between the folks on my side (Biogen, Anthem Blue Cross, and my attorney) to nail down this problem and determine how many thousands we have paid because of this issue.

We shall see...

-Vic

Good Luck and please let us know how it goes, Vic!

Maybe you can educate us so others in the same situation can learn about it and be pro-active if and when it happens to them!

Balance Billing:

http://www.businessweek.com/magazine...8040915634.htm

Pay close attention to what you are billed, and NEVER believe those in the Billing Department of any institution/company. They will always say that you are wrong and that your credit will be damaged if you do not pay the bill.

-Vic

You mean, like when a hospital Doc billed me for Psych counsols for my DH, who was in a coma, at the time? :mad: Needless to say, I did not pay them and after a phone call from me, was never billed again. :p

I am so happy for you, Vic . . . :yahoo:

Cherie

Wow, Vic . . . this is VERY important information for people to be aware of:

"These laws require medical providers to seek payment only from the insurer for services covered by the plan. Many states also shield insured patients from balance billing by out-of-network hospitals and doctors in emergencies, since patients usually don't control who treats them in those situations. (Bans on balance billing generally don't apply when a patient gets an elective procedure, such as cosmetic surgery, or seeks out-of-network, non-emergency service without a referral.)"

I hear of this happening a LOT in the US (excess billing, like this). Thank you for pointing this out, and I hope it helps a lot of people.

Cherie

That's grrrrrreat, Vic...:Dancing-Chilli::Dancing-Chilli:

Good Luck..:hug:

Oh BRAVO Vic!!! :Bow::You-Rock::Good-Post:

You da MAN!

As most of you know, Tysabri trials have been started for Multiple Myeloma (a form of cancer) The P1 trial started a few weeks ago.

There is a man, Frederick Baron, who is dying of MM. His family has asked for Tysabri. The Mayo clinic doc who is treating him said he only had a few days to live, and told them his only chance at recovery is Tysabri. Mayo happens to be one of the trial sites, even though they are not advertising it, due to the overwhelming number of patients who want in on this trial)

Mr. Baron also happens to be a lawyer who has sued a lot of drug companies and manufacturers ( think Merck and Vioxx, mesothelioma and asbestos) and a huge Democratic fundraiser.

He has had some big friends go to bat for him ( Clinton, Kennedy, Lance Armstrong, etc) and begged the FDA to allow him to have Tysabri. The FDA said ok. Then the family went to Jim Mullen ( the CEO of Biogen Idec) Jim Mullen said NO.

It now appears that Mr Baron's family has found a way, outside of the TOUCH program and outside of the P1 trial (only 12 trial patients) to get Tysabri and has been infused, despite Biogen Idec refusing to agree to the compassionate use granted by the FDA.

No one is saying how the family overcame the TOUCH program, but they did.

This case will bear watching, due to the unknown implication it will have, both on the trial for MM and for those who do not have influential friends to go to bat for them and have late stage MM, and on Mayo Clinic as one of the trial sites ( for allowing off label use without Biogen's permission)

To read more search on Frederick Baron or go to his son's blog at http://dembot.com/post/54498664/open...omment-3101930

I wish him well, River......but, I thought that Ty was actually linked to possibly causing MM???

No Sal. You may be thinking about the MELANOMA letters, where two doctors from the same practice sent letters to the FDA and AJN about two patients who had a previous history of either melanoma or a family history of melanoma who developed a melanoma or had a melanoma that was already diagnosed, exacerbate.

No link has yet been proven.

This man has MULTIPLE MYELOMA.

Wow RW, I hope it will work for him at this late stage. :( Too bad he couldn't have received it sooner.

While I certainly hope that it works out for this man, it brings up some very interesting questions, Wiz.

For instance: what if he dies anyway.

Does Tysabri again get listed as the cause of death?

If he does die, does it affect the stats for the P1 trial despite his obtaining it outside of the trial and outside of the TOUCH program?

Should a very well off man who has a history of huge lawsuits against drug companies and who has influential friends get a drug that others with the same disease and at the same point who are NOT well off and well connected have no chance of obtaining?

Should a trial center be suggesting or allowing treatment with a drug that they have agreed to run a Phase 1 trial for, after the person hasn't met the criteria for the trial, the trial is full, and his inclusion may skew the trial results since it is only a 12 patient study, especially when the drug in question is NOT allowed to be prescribed off label for ANY reason by the requirement of the FDA, who wouldn't allow that drug back to market without strict guidelines and monitoring?

The family had stated that they would NOT sue or hold Biogen liable for anything that happened, but the history of this man and his law firm precludes me believing anything.

I just do NOT want any chance of Tysabri being pulled or maimed further by off label use regardless of who or why. I for one cannot afford further disability or relapse, and I won't be happy if something happens to endanger any of us on Tysabri. We've already been through this once and it didn't go well for a whole lot of patients who are now disabled because of it.

What a roller coaster ride!

This has been fascinating to say the least.

Since I have been off of Tysabri (9 weeks now), my neuro-team has spent a long time trying to determin how to deal with my problem,..., only to find out that this infusion center cost issue has crushed several of their patients financially.

I know that Biogen has provided me one free "emergency infusion" for next week, and the new infusion center will only charge an insignificant amount. But,.., there's more...

The new infusion center will be charging the same amount as the previous one afterwards. Hence, the financial burden of Tysabri will remain in place.

My neuro-team has done what they can.
Biogen has done what it can.
My insurance has done what it can.

The infusion costs are waaaaaay too high.

As of two hours ago I have decided that Tysabri is no longer worth the financial strain.

Hence the reference to a "roller coaster ride".

Rebif is now back in my future.

As a side note, my neuro-team is reviewing two new studies that show that Tysbari can take between 4-6 months to finally leave your system. When the citations for the publications are made available I will post them.

So there it is...once again I am off of Tysabri but not concerned, just fascinated by the process and by how absolutely infuriated neurologists are (like patients) at the cost of infusions.

As Yeager says, "Press On..."

-Vic

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).:confused:

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. :mad:

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. :rolleyes:

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

Tysabri #2 Allergic Reaction
 

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

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!!) :D

Hey Joe!

I got to thinking after I responded to your post on the MS board.

Transient reactions have been noted in people who start Tysabri., with a lot of them calming after 4-6 infusions.

If your blood test comes back positive for antibodies, your neuro may keep you on Tysabri for the next few months and check them again, as long as you aren't having full blown allergic reactions. That's why a lot of them use the benadryl/tylenol protocol. They aren't having anyone take more than 25-50 mg. of benadryl. The usual is 25 mg, more of a calming dose, to stop the histamines from ramping up.

I'll see if I can find the info on this for you. I have it stored somewhere, but I am off to work and don't have time to search right now>

Cheryl - I wrote a long explanation regarding the VA and my experieinces many years ago, and then had to delete it because it said too much and it will open a can of worms. For my squad, dealing with the VA is tantamount to opening Pandora's Box.

All of us would rather continue to rely on each other as we did over 25 years ago than to bring back the VA nightmare. This is why we all obtained individual policies outside of the DoD.

I did come close to opening this can of worms when I received a check a while ago. I just split it among those of us still around, and it helped bring us even closer at a time when it was needed badly by a few of us. I have to thank Sandy for this.

RW - It is amazing how much is being charged. There are so many people with high deductables that the costs just drive them away from all MS medications.

-Vic

Transient allergic reactions? :confused: (Not that Joe's reaction seems too serious at this point ...). Or, do you mean "antibody" reactions?

Maybe you know why the manufacturers (and FDA) have made a point of saying "Do not take Tysabri if you are allergic or have PML", yet many are advised to take antihistimines so that some allergic reactions end up being masked? To me, this seems contradictory, but maybe I'm missing some part of this story. :confused:

Cherie

I am impressed that they took his blood to test for antibodies after his first reaction. And they did not test me until after infusion # four. In my case the benadryl did not mask the reactions, although I assume they could have been even worse.

[QUOTE=Riverwild;394588]

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.

######################

RW:

That is highway robbery!

Our provider charges our insurance company $2273 for a vial of Tysabri. The neurologist's infusion center bills $579 for the infusion but accepts the $202 payment that insurance covers since he is a "participating" doctor.

So, the insurance grand total payment per infusion is $2475 in our case. We pay nothing out of pocket under the medical insurance plan that my labor union negotiated. How can these numbers vary so greatly as many have reported here?

I can retire in 13 months but I'm now reconsidering - just to keep the same medical insurance to cover LL's meds.

Obama will solve this mess.

I agree, Joe has very attentive doctors, doesn't he?

I also agree that Benadryl will not mask severe reactions . . . but the documentation does not refer to JUST severe reactions. It says "do not take Tysabri if you are allergic", and it defines allergic reactions to include symptoms as minor as hives or itching. Benadryl may very well mask those type of symptoms.

http://neurotalk.psychcentral.com/thread57177.html

Cherie

If there is a big difference in how well you do now, Vic, it may indicate how well Tysabri was doing for you . . . OR it may indicate a "rebound effect" from being on it. Either way, it will be interesting.

I'm glad they are waiting 4 months too :), and hope that something new is available for you by then. :)

Cherie

No great in put here
yes - the cost of ty went up for all - I think mine went up 1000. per mo, but can not pull data - now at 6201.50 but not really. I have indv. pay BCBSNC - the infusion centers contracted price is 3100.30. So they bill for 6201.50 and get 3100.30 I pay 0. If I did not have ins I would be billed at 6102.50. I think it use to be 51 or 5200. (ck prior posts as it is there).

What I want to know is what the Hel# happens to the few of us who have this crap and 0 ins. This may be me soon and will be some day. I live on borrowed money ccards... u Know the deal. The ins in USA sucks!

Great point, Cherie.:)

For the first time in two years I actually have facial numbness and numbness in my hands. Hence one may say reliably that the absence of Tysabri in my system for 85 days could be the reason for these symptoms.

-Vic