Hi Victor -

I remain saddened that you will be discontinuing Tysabri - despite your improved QOL. I'm also unsure as to what the heck your infusion center was charging you! My infusion center costs (here in the LA area) are less than 200$ - even before the insurance adjustment...that was what they billed the insurance company. That was their base charge! If your insurance company will pay the cost of the med - than it is possible for you to receive your infusions elsewhere? You don't live too far from where I am - 90 minute drive maybe? Would it be worth looking into? I'm still unsure of how the heck the treatments cost you so much money....with insurance covering some of it. I'm just plain confused. Full cost of Ty without insurance is around 2k (roughly?)....so even paying that fully - the costs shouldn't be nearly what you've had to spend. What was the infusion center charging you???

~Keri

Keri,

I was/am caught between a rock and a hard place so to speak. My net worth is too high to qualify for assitance and my available cash is too low to pay for the infusion center costs.

I have a Major Risk Medical Insurance Graduate Plan through Anthem Blue Cross, wherein the deductable is insane and the out of pocket costs are equally insane. My PPO will not budge on the infusion center costs, and they are even worse if I go to an infusion center outside of those listed by my insurance plan.

There have been at least six people helping me with solving this issue (two neurologists, one attorney, one Patient Advocate, Biogen and Lauren) and we have all come up with the same numbers --- outlandish infusion center costs. Hence my new path to Rebif.

It is just one of those things that happens with a damaged healthcare system.

I will survive and press onward...

ON A MORE IMPORTANT NOTE:
How are you doing with your new treatment?
It sounds like a viable option for many folks.
Thanks for keeping us in the loop! I appreciate it.

-Vic

As I posted on the MS forum, Yabbit and I attended a seminar sponsored by Biogen/ MSActiveSource. This is going to be a long post!

I was specifically interested in the Tysabri questions people asked. I also got to speak to the two Biogen reps about my concerns and get some answers to some questions.

I took some rough notes on questions and this is what I got:

They admitted that the monotherapy rate of PML is 2:35K+ at this point.

There is some thought that Pt. #1 back in September may not have had PML at all!! He was the one who had no JCV showing in his CSF after first LP and an extremely low level after LP # 2. His MRI was reviewed by a number of neurologists and radiologists and most of them feel that it wasn't PML. This was the patient who was treatment naive and is recovering at home. He had some IRIS problems after treatment with PLEX and mefloquine and more info. would be forthcoming as it is known.

Pt.#2 definitely had PML. He was the one whose neuro continued Tysabri and administered steroids before finally testing for PML and he is still in a rehab, with major disability. He was just brought out of a drug induced coma last month. He is suffering from IRIS and they are not sure what will happen with his case. This is the patient who had been on Imuran for years, along with CRABs. It is not known when he had his last dose of Imuran.

Pt#3 ( US patient) is recovering at home. There is still no information at this time due to HIPAA laws. This patient was 14 infusions, had methotrexate prior to Tysabri and had her last dose of metho 4 months prior to first Ty infusion.

I asked about Ty as first line therapy. Answer was every person with MS is different and what would be prescribed for one may not be done for another. If a pt. presented with a lesion load of 20 and 2 severe relapses within a short span of time, doc would be more likely to prescribe Tysabri, than for one with severe relapse and only two lesions. It depends on case and amount of risk patient and doc were willing to assume, but that Ty IS being prescribed for first line.

I asked why Ty is not prescribed BEFORE Novantrone, Imuran, Methotrexate, Cellcept, etc. They said it will come as neuros become more comfortable with Tysabri. It was also stated that Ty will be prescribed more for first line therapy as neuros become more comfortable with it.

For both of the above questions, the example was given: Remember the early 90s when there was a lottery for Betaseron? Some people couldn't wait to get on it and some crapped all over it for whatever reason. As it became more accepted, more people were treated. As each new drug came out, the same thing happened. There's no one perfect choice. Every patient is different and every doc is different and every treatment will be different!

I asked about washout times for patients who are on heavy duty treatments. Doc responded that he would not be prescribing for anyone who has been on those treatments until more info was available. He felt that some of them ( Novantrone was used as example) stay with the patient for a year or more and that more information is needed.

The cost of Tysabri is now 2295.16 per dose. Previous price was 2228.31

Biogen and Elan can help with the cost of the drug, but NOT with infusion center costs. I stressed the need for more information to be available for people who call and ask about this. I asked them if a system could be set up to direct people to places where they COULD get help with costs, such as NORD, and other organizations. The rep stated that they are not allowed to help with actual infusion costs as it could be construed as "enticement" to go on the drug, but agreed that something could be done to direct people.

I spoke to the reps about MSAS specifically. I have NEVER heard from my case worker since I got the first call to welcome me and the second call with my appointment information and insurance information. I admitted that I may have scared the girl when she called to "welcome me" as I had waited three weeks for that call and she had nothing for me except the "welcome". I told them that when you are on Copaxone, the SS people are right up your butt with info, mailings, calls, etc. Not sure if that happens with the other CRABs but it sure doesn't happen with MSAS.

I spoke with her about the MSAS site and how Tysabri was NOT EVER mentioned by name ie: "Biogen- Makers of Avonex and another MS therapy" and that the Tysabri.com site directs you to call the number and you get an Avonex rep and that it is VERY confusing for some folks! I told her I would have brought in my laptop to pull up the sites but that both of them were down when I went to them to get a screen shot to bring up earlier while I was waiting for the seminar to start! Their reply was that they are required to clear everything before it is put on either site, every word of the advertising and packaging for the free stuff they passout has to be approved, every word they say through MSAS has to be cleared, etc etc etc. They admitted that they are as frustrated as many out here are, and that it is getting better slowly, and a lot more activity has been seen since another drug company has come up with a generic for Avonex ( now tied up in court) I had more to say about all that but since it's more about protecting a cash cow I will hold it back from this thread...

I also brought up the problem some people have had when signing up for these seminars and they ask you what treatment you are on and there's no check off for Tysabri. It's not like that on every seminar listed but it is like that for a few of them!

A lot of the attendees asked Ty questions. It was good to hear some of the misunderstandings about Tysabri and hear them officially corrected!

Good seminar. If you get the invite, take advantage of it and go!

Were there any questions or comments about administering Ty for 12 -14 months and taking 2 months off and resuming again?

No one brought it up and I forgot to ask! I will ask when I go back to the doc after my MRI!

I didn't take up too much time during the Q&A since there were a lot of questions and I get direct access to the doc whenever I need to talk to him. I even got shoved aside by some people when I was talking to the Biogen reps! The reps did come over to talk to us after the room had cleared out.

Hi RW, thanks for the fantastic information. How often do they do these sorts of things and how do you get invited? Like you, I have never once heard from anyone connected to the drug (case manager etc.) except for the very first time. One thing I did like about Shared Solutions is that they were always checking in with you. Somehow it felt more reassuring and made it easier to stick with the drug. Biogen should definitely move in this direction -- you would think after the PML case(s) they would have sent something out. Of if that was too problematic (for legal reasons?) they should still have a system in place where people call periodically and check in with you. I'm surprised from a financial standpoint they don't do that (providing unsolicited support to keep people on Tysabri).

That was the point I made, Natalie. They should be asking people once in awhile about how they are doing, and whether they have any unanswered questions. It would be in their best interest as a company selling a major MS treatment, and they should start acting like that is what they are doing.

Yabbit was the one who got the information. Go to MSActiveSource.com and click on educational events and choose your state. If there is something scheduled, you will find it there.

For a good laugh go to http://www.msactivesource.com/msavPr...rces-links.xml and look at the bottom of the page. It's STILL there!

They must have worked on the site this weekend because Tysabri IS mentioned now under educational events. There are a few teleconferences listed about Tysabri.

Natalie,

You mentioned that you felt that Biogen should have sent something out after the PML cases were reported. They had conferences for the neurologists who are prescribing Tysabri and in most cases the doctors then take the information gained from those conferences back and share them with the patients. I doubt they have had one yet for the US PML patient yet, it just happened. The two patients this summer were conferenced, my doc was on the first conference call and that was two weeks after the report.

Biogen has stated that they will no longer be reporting PML cases the way they have in the past. They reported the EU cases because they were the first since return to market. They reported on the US case because the SEC required them to file an adverse event report (8K) with the SEC because it could affect the value of shares, and it was the first US patient since the return to market. They will be leaving it to the doctors to file adverse event reports with the FDA, since the labeling already reports the rate of 1:1000 chance of PML, and the rate so far is well below that.

It will be interesting to see what actually comes from investigation of these patients and their drug histories.

Since we have to refer to this thread to read your notes from the seminar. . . and then another thread for the ensuing discussion . . . I'll cross reference the two threads.

Last I heard, there were about 9,500 people who are (or have been) on Tysabri for 18+ months, including those in the trials. From what we've been told publically to date, there were 3 cases of PML in the trials, 2 in Europe, and now one in the US. Hence, the ratio should now be closer to 6:9500, or 1:1583 . . . (not anywhere near 2:35,000 they are “admitting” to .)

Further discussion is here though, so as not to bog down this thread:

http://neurotalk.psychcentral.com/thread59295-2.html

Do you happen to have a link to this information?

Thanks

Cherie

That just kills me!! "Another MS therapy?" Are they afraid to say what it is?...The big bad scary Tysabri??

So there will be no more public pronouncements? We will have to find out by scouring the SEC or FDA reports? I find that absolutely crazy. I know why they are doing it though.