Living With MS

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

Thursday, November 27, 2008

My Tysabri Diary...

28th Tysabri Infusion Report & A Happy Thanksgiving Message...,I got home late yesterday afternoon from my 28th Tysabri infusion, everything went fine and nothing new to report other than feeling a little tired..., so I went to bed early last night.

I wanted to wish everyone a very happy Thanksgiving, and below are some thoughts that I want to dedicate to my wonderful friends who touch my life with the treasure of their being... May your soul decisions always be made with your heart, and not your head. (the words below were shared with me by a friend, and I wanted to share them with you as well).

Happy Thanksgiving Everyone! Lauren :)

1. Don't go for looks, they can deceive. Don't go for wealth, even that fades away. Go for someone who makes you smile.

2. There are moments in life when you can miss someone so much that you want to pick them up from your dreams and hug them. I hope you dream of that someone.

3. Dream what you want to dream, go where you want to go, be what you want to be, because you have only one life and one chance to do all the things you want in life.

4. May you have: Enough happiness to make you sweet
Enough trials to make you strong
Enough sorrow to keep you human
Enough hope to make you happy
And enough money to keep you comfortable

5. When one door of happiness closes, another opens. But we often look so long at the closed door, that we don't see the one which has been opened for us

6. The best kind of friend is the one you can sit on a porch with, swing with, never saying a word and then walk away feeling like that was the best conversation you've ever had

7. It's true that we don't know what we have until we lose it, but it's also true that we don't know what we've been missing until it arrives

8. Always put yourself in others' shoes. If you feel that it hurts you, it probably does hurt the other person too

9. Every careless word may kindle a strife
A cruel word may wreck a life
A timely word may level stress
A lovely word may heal and bless

10. The beginning of love is to let those we love be perfectly themselves and not twist them with our image otherwise we love only the reflection of ourselves we find in them

11. The happiest people don't necessarily have the best of everything, they just make the most of everything that comes along the way

12. Maybe God wants us to meet a few wrong people before meeting the right one so that when we finally meet the right person, we should know how to be grateful for that gift

13. It takes a minute to have a crush on someone, an hour to like someone, and a day to love someone, but it takes a lifetime to forget someone special

14. Happiness lies for those who cry, those who hurt, those who have searched and those who have tried. For only they can appreciate the importance of people who have touched their lives

15. Love is when you take away the feeling, the passion, the romance and find out you still care for that person

16. A sad thing about life is that when you meet someone who means a lot to you and then only to find out in the end that it was never meant to be and you just have to let go

17. Love starts with a smile, develops with a kiss, and ends with a tear

18. Love comes to those who still hope even though they've been disappointed, to those who still believe even though they've been betrayed, to those who still need to love, even though they've been hurt before

19. It hurts to love someone, and not be loved in return but what is most painful is to love someone and never find the courage to let the person know how you feel

20. The brightest future will always be based on a forgotten past. You can't go on well in life until you let go of your past failures and heartaches

21. Never say goodbye when you still want to try;
Never give up when you still feel you can take it;
Never say you don't love that person anymore when you can't let go

22. Giving someone all your love is never an assurance that they'll love you back. Don't expect love in return, just wait for it to grow in their hearts, but if it doesn't, be content it grew in yours

23. There are things you love to hear but you might never hear it from the person whom you would like to hear it from, but don't be deaf to hear it from the person who says it with all their heart

24. When you were born, you were crying and everyone around you was smiling. Live your life to the fullest so that when you die, you're smiling and everyone around you is crying

Author Unknown

Here is a really nice Thanksgiving card from Jacquie Lawson (this was shared with me by my friend Cyndee..., Yum!):

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!