Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Saturday, November 01, 2008

My Tysabri Diary...,

First of all, I have/had been helping a fellow MS patient that had to go off of Tysabri therapy because he could no longer afford the exorbitant costs of his monthly infusions...., his name is Vic (I have his permission to use his first name). If any MS patient currently on Tysabri therapy is having the same problems as Vic, please write to me at , giving me detailed information about the financial problems/insurance problems you are having with your infusions, I will not only write to you further, I will write to my contact over at Élan to see if anything can be done for you.

I had initially contacted the Patient Services Supervisor over at Biogen and after about a week, they had temporarily resolved this MS patient's situation, however subsequent to that time, I received a phone call from this person the following week and I was told that there was nothing further that they could do & unfortunately, everything was going to revert to the same way it was before their intervention the following month. Therefore, this patient as well as 12 other patients in his neuro team's practice, had to definitely drop out of the Touch program because their monthly financial output for their therapies was making it impossible for them to continue on Tysabri.

When I had nowhere else to turn to try and get assistance for this patient, I contacted Élan (the company that discovered Tysabri, Biogen's partner with regards to Tysabri). Below are a few of our various paraphrased e-mail exchanges between my contact over at Élan, myself, and the patient - after just two days of Élan being made aware of this situation (I advised them on a Friday - so obviously, they worked on this problem over the weekend!), Vic is now going to start back on Tysabri therapy November 4th and all of the other MS patients that were in his neuro team's group are also able to resume their Tysabri infusions...., Woo hoo!

In addition, I had my 27th Tysabri infusion Wednesday..., all went fine, although I'm still feeling a little tired. When my infusion nurse told me what happened with the paperwork we filled out over a month ago regarding the changeover to my new neurologist, ummmmm, let's just say that not only was I not surprised at Biogen/MSActiveSource's inaction, grrrrrr, but I definitely let the person that has been helping me over at Élan know what happened, and I have been assured that the the information I provided will be sent to the appropriate person(s) at Biogen....,

Here are portions of the different e-mail exchanges I have had with Biogen, Élan and the MS patient Vic...,

My initial e-mail exchange (paraphrased) between me and Vic:

Oh Vic,

I read your post on "X" MS board that you were having to stop your Tysabri treatments due to the exorbitant cost of the infusions charged by your infusion center.

Have you contacted your Tysabri Case Manager at 1-800-456-2255 and asked them to assist you in finding a less expensive charging Touch certified infusion center near you? Also, have you asked them about any programs they have to assist you with your co-pays? If you have and received no help from them, have you asked to speak with a Tysabri "Team Leader" that supervise the Tysabri Case Managers?

Most importantly, have you reported that infusion center to the California State Insurance Commissioner (
) for price gouging with regard to the overcharging of the infusions and/or have you appealed their billing practices? Or have you contacted the California Consumers Hotline in that department at ? It is a toll-free number.

I know of several Tysabri patients that have switched infusion centers to one that does not overcharge exorbitant prices for their infusions...,

Just trying to help..., this is a terrible situation and I want to try to help you if I can, please let me hear from you at your earliest convenience...I wish you only the best Vic.


Initial e-mail reply (paraphrased) from Vic to me:

Thanks, Lauren.

I have done everything that you noted in your e-mail but the cost is still beyond belief. Spending thousands each month is no longer a viable option.

I know of a bunch of people who have been hit by this fiasco and have all quit infusion medications. Most have gone to either Beta or Rebif.

Biogen has been wonderful to me in that they have reduced the cost of Tysabri to a very good price for me, but the infusion center(Wilshire Oncology) refuses to budge.

I will just press onward with Rebif and see how things go.

I hope things are going well for you.-Vic

After questioning Vic further as to what exactly his infusion center/and insurance situations were, I received the following...,

Subsequent e-mail (paraphrased) that Vic sent to me:

Lauren,My neuro team is infuriated over the infusion costs ($675), and happy that Biogen has helped reduce the Tysabri costs(~$2,500 per dose). But the cost of my insurance ($12k/yr) plus the cost of the infusions has driven me away from Tysabri. So far, over the past 18 months we have spent about $120K on Tysabri, infusons, check-ups, urology because of UTI's, MRI's, etc, etc, etc). When I was using Avonex the total cost out of pocket was $200/year. And now Rebif will only be charging me $51/month or about $600 per year. I realize that Rebif may not be effective, but some medication must be used at this time.The amazing thing is that if I had no insurance and no assets, Tysabri+infusions would be free.-Vic

Initial e-mail exchange (Paraphrased) between me and Biogen: ..., I'm contacting you to see if you can possibly intervene on behalf this patient because not only is he having to drop Tysabri, there are at least 12 other patients in his neurologist's group that are also having to drop out of the Tysabri program due to the exorbitant infusion costs...., and if this is happening to not only them, I'm sure that there are hundreds, if not thousands, more MS patients that this is happening to...., Vic also advised me that:
"My neuro-team has many cases like mine wherein infusion center costs have prevented the continuation of Tysabri" ..., (After about a week of Biogen working on this problem, the situation was temporarily resolved, and when I advised them of the final outcome which was still preventing this MS patient from continuing his Tysabri infusions, I subsequently received a phone call a couple of days later and was basically told that there was nothing further Biogen could do for this patient as they must look at each patient on a "case by case" basis, requiring each patient to first contact their Tysabri Case Manager to see what can be done. )... ARRRGH!

Subsequent e-mail exchange (paraphrased) between me and Vic:

My old infusion center nurse called me last night and said that they now only have eight Tysabri patients left, when they used to have as many as 46. Of the eight remaining, three of them will be leaving soon because fo the cost of the infusion. That will only leave five of the original 46 still on Tysabri. Yikes! My neuro-team is absolutely disgusted with the entire process and like you, they have exhausted every avenue at their disposal. It looks like I will be on Rebif as soon as the Tysabri clears my system.Thanks again for doing so much for me and all of the others who have had to quit Tysabri. -Vic

Initial e-mail exchange (paraphrased) between me and Élan:
a situation has come up with a MS patient that has been on Tysabri for quite some time, and he was doingstayswell on it, but had to go off of the therapy because of the exorbitant costs that the different infusion centers were charging him, and even though he had private insurance, he could no longer afford his monthly monetary output for same. (note, I sent them all of my e-mail exchanges between me, Vic, and Biogen).

Subsequent e-mail (paraphrased) that I received from Vic:


I do not know who you called or what you did, but THANK YOU !!!!

I see my neurologist on November 3 and will be back onTysabri on November 4 !!!

Some way or another there seems to have been a deal negotiated between Biogen, Elan, Anthem Blue Cross and the infusion center to make this all work out in a fair manner.

Thanks again for all of your help !!! -Vic

Additional e-mail exchange (paraphrased) that I received from Vic:

Thanks again, Lauren!

My neurologists are both thrilled by this, and the amazing thing is that I was notified by Biogen that I am already enrolled in the TOUCH program even though I was disenrolled a few weeks ago....Thanks agin. :-) -Vic

E-mail exchange (paraphrased) to Vic after I found out that he was restarting his Tysabri again:

Wonderful Vic! I'm so glad & happy for you!!!

I will let my contact over at Élan know that you are going back on Tysabri when you see your neurologist on November 3rd... woo hoo, all of the thanks go to Élan as they truly worked a miracle!

I have to cut this e-mail short because I need to get my rest before my next Tysabri infusion tomorrow..., againVic, I'm so happy for you..., take care now.

Lauren :)

Subsequent e-mail exchange (paraphrased) between me and Élan:

Good morning XXX (Or good afternoon depending upon where you are),

Thank you for your e-mail, I am glad that I have someone else to turn to besides XXX (the Biogen Patient Services Supervisor) because they could not help Vic the way you did..., at my 27th Tysabri infusion yesterday, my infusion nurse described to me all of the problems they were having with Biogen representatives over at MSActiveSource (i.e., the Tysabri Case Managers). For example, more than
28 days ago, I changed neurologists within the same Medicare HMO (Kaiser Senior Advantage) to a neurologist closer to me that is also Touch Certified, and my Tysabri Case Manager did absolutely nothing to ensure that my future Tysabri infusions remained uninterrupted.

If it had not been for the
daily phone calls that my infusion nurse had to make to MSActiveSource (never once speaking to the same person over there, and never once speaking to my Tysabri Case Manager) making sure that all of the paperwork was completed, signed by both me and the infusion center, etc., including the fact that one day they were told by MSActiveSource that they could not fax anything until 1:00 PM when time was of the essence, so as to not interrupt my infusion schedule) I would have had to reschedule my infusion appointment. None of the paperwork was completed on their end, confirmed, & authorized until 9:00 AM the day of my infusion yesterday which was scheduled at 10:00 a.m.

The lackadaisical attitude of these Tysabri Case Managers over at MSActiveSource is placing Tysabri patients in peril that have their infusions interrupted/ceased.

I am advising you of the above not to complain, but to explain to you that I was already aware that the change in neurologists would take time for confirmation, authorization, etc., but
28 days??? Not hardly..., this should've been completed by my Tysabri Case Manager within a week at the most.

And almost everything that I hear/read on the different MS boards is pretty much like the scenario above, problems galore, and confirms my suspicions that MSActiveSource/their Biogen representatives (Tysabri Case Managers) are not doing what they were hired to do (in my opinion), which is
assist disabled MS patients when it comes to managing their Tysabri therapies and not continuously throwing out roadblocks which inhibit-block and/or postpone their treatments. Most of these MS patients are unable to retain/remember, or have the wherewithal, physical ability, insurance understanding and knowledge to do what needs to be done in order to ensure their therapies remain uninterrupted. This worries me tremendously because I've been dealing with them since 2006....,

Anyway, I apologize for monopolizing your valuable time XXX, but I just wanted to make you aware of what is happening in our "world of MS"..., Enjoy the rest of your week and again, thank you so much for helping these patients!



  • At 4:12 PM, Blogger Denver Refashionista said…

    You are awesome to help out so many other people. Thanks for all your great info and efforts.

  • At 4:38 PM, Anonymous Anonymous said…

    Lauren, as usual, you have used your networking contacts, your logic, good communication skills as well as your heart to resolve what was aparently, a systemic problem at a high corporate level. Thanks for being actively available for Tysabri users. You should be pleased with your abilities to resolve such issues.


  • At 2:39 PM, Blogger Vic said…


    Thanks again for all of your hard work.

    Unfortunately, although you, Elan, Biogen and my neuro-team have done everything possible, it is not a certainty that I will have to switch to Rebif. The Infusion centers will not help with the costs, and even refuse to negotiate.

    I start Rebif in a few weeks. The medication is here and the nurse will be here soon (for injection training - like I need that, LOL).

    Thanks again, Lauren.

    You are great!


  • At 12:46 PM, Blogger Vic said…


    Just checking in on you to see how things are going.

    I hope that all is well.


  • At 10:09 PM, Anonymous Frances said…

    When you wish to become a nurse case manager, you don't have to be limited to your options in actual schools since there are available courses online which allow you to learn at your own pace and not give up your day job as well making it a win-win situation for your needs.


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