Living With MS

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

Wednesday, August 30, 2006


MS Patients For Choice.Org Now Has Tysabri Infusion Sites

There are still a few bugs to work out, but the website now has updated information, including these really useful Google maps for all of the US ZIP Code ranges so folks can easily search for the closest TOUCH-enrolled Tysabri infusion sites. We are hoping to get a list of TOUCH-enrolled neurologists before long, but as since, there is a substantial overlap, as the larger MS practices have in-clinic or in-hospital infusion clinics.

These are regular Google maps, so if you know how to navigate those, you will do fine. You can drag the map with your mouse, or use the scale in the upper left (or the wheel on so-equipped mice) to zoom in or zoom out. You can zoom in all the way to see the precise location of a particular clinic, and use the "Hybrid" button in the upper right to see an aerial photo combined with a street map.

There is also a list of infusion sites on the left side, so you can click on any of those to see the precise location. Here is link to the page with the infusion site maps:

Singing the theme song from MTV, but changing it a little bit...."I Want My, I Want My, I Want My TY-SA-BRI! ....... (teehee)


As many of you know, I am a big supporter of Tysabri (although I will support anyone's choice of MS therapy). The website I belong to: is compiling data on Tysabri infusions, which will be posted on our website and updated regularly to assist other MS patients looking for this information, as well as assisting us in putting together a better overall picture of how well Tysabri is being introduced and its benefits/risks. We will also have a list of "TOUCH" certified neuros/infusion centers located nationwide to make access easier for patients.

Please review the below information and if you feel more comfortable sending your information to me (as you know me) at LGLBGL2003@AOL.COM , I can edit out any "personal" information received before I forward same to our patient advocate, David Kaplan (a WONDERFUL man who helped organize MSpatientsForChoice, and met with FDA officials to argue for having MS patients testify at the March 7, 2006 FDA Advisory Committee hearings re: Tysabri). You may copy the information below with your responses into an email, or attach it to an email, and send same to either myself, our website or David Kaplan directly...thank you all SO much, Lauren :

From David Kaplan:

Thank you for contacting about your progress toward getting Tysabri or in using Tysabri. I am the Washington, DC coordinator for this nonprofit, all volunteer website, which was started by MS patients in early 2005 to help spread the truth about Tysabri, and organize to inform the FDA, the media and the public about the patients’ perspective.

We are compiling information on the progress of MS patients in getting enrolled in the TOUCH program, getting insurance reimbursement resolved and getting their first Tysabri infusion. We will also be monitoring how patients do on Tysabri, collecting information on benefits and any issues that might arise. All personal identifying information will be kept confidential, with only non-identifying information compiled and disclosed to get an overall better picture.

We are interested in the following type of information, and anything else you care to share. If you can get other Tysabri patients to share this information, that would be very helpful, as the more information we can collect and share with everyone, the sooner we can get the story out, and notice any patterns:

. How long did it take to get enrolled in the TOUCH program, once you started the process?

. How long did it take to get insurance reimbursement resolved?

. What was the date (or the scheduled future date) of your first Tysabri infusion?

. Did you find your Biogen case manager to be helpful, or did you have to really push to get TOUCH-enrolled and insurance reimbursement?

. We are collecting information from each vial of Tysabri used, so we can better track Tysabri usage. We would like to get the Lot Number and the Expiration Date. You have the right to get this information, but you will have to ask for it.

. What (approximately) is your total co-payment for each infusion?

. Will your infusions be taking place at your neurologist’s office, or at a separate infusion center?

. How far (approximately) do you have to travel from your home to where you get your infusions?

. After your first infusion, did you notice any change in your condition? At what point, and exactly what did you notice?

. As you proceed through subsequent infusions, we would like to track your progress. For example, before your first infusion, what was your general level of disability, in terms of everyday functioning? At what point did you notice any changes, and what were those changes? Did you have any sort of adverse reaction to the first or any subsequent infusions (which ones, and exactly what)?

. What is the general attitude at your neurologist’s office about Tysabri? Were you encouraged to try it, did you have to push to convince your doctor to evaluate you for Tysabri, or was it something in the middle (provide as much detail as possible, please).

. What are you hearing about Tysabri from other MS patients you know or meet at the doctor’s office?

. What, if any, MS drug(s) were you on prior starting Tysabri? What were your experiences with those drugs? How long a "wash out" period did you have before starting Tysabri?

. Did you use Tysabri when it was briefly on the market in December 2004 through February 2005? If so, how many infusions did you receive? Did you notice any benefit? Exactly what?

If you have other questions you suggest we ask Tysabri patients, please let me know. Again, all personal information will be deleted when this information is compiled.

Please let me know if you have any questions.

David E. Kaplan

Web: www.MSPatientsForChoice.Org
David E. Kaplan
2831 29th Street
NWWashington, DC 20008
Tel 202.483.7913
Cell 202.625.0030
Fax 202.332.4877

Monday, August 28, 2006

Kaiser Permanente So. Calif./Tysabri Saga continues.......,

Whoa, more good news from Kaiser... I got off the phone earlier today with the members services rep from Kaiser who's been helping me through their gawd-awful maze. She told me that Tysabri will be covered under Part B of the Sr. Advantage Plan! (Medicare HMO Plan, Note: I was originally advised that Tysabri would not be covered under Kaiser's Senior Advantage Plan either under Part B or D as it was excluded as experimental!!!)

This is a classic example of patients being their own advocate (do you guys think by me calling Medicare originally to find out if it was covered under their Part B [yes it is!] had anything to do with stressing this fact to my member services rep before she called Kaiser's Head Oakland Pharmacist to inquire why Tysabri was originally not covered under the Sr. Advantage Plan - Medicare HMO Plan as being "experimental"?????).

Only 2 remaining hurdles to overcome: 1) remaining SPMS with relapses and 2) getting Kaiser So. Calif. to speed up their in-servicing of the neuros and infusion centers!!!


Sunday, August 27, 2006

Patient demand for Tysabri, and update on the Kaiser So. Ca Saga....

Ok, now to start off, I believe patient demand for Tysabri initially will be fairly high. Why you ask?? Because 50% of the MS population is no longer RRMS, they have progressed to SPMS with a majoriy falling into the "with relapses" category (like me)...and we do not want to get worse - progressing to SPMS w/o relapses - making us ineligible for Tysabri and only making us eligible for incurring further disabilities! The patient is the one suffering these risks, not their neuro that either refuses to rx Tysabri through the TOUCH program or is taking a 'wait and see' attitude...patients educated in their disease process, educated in the true & correct facts regarding Tysabri, and who fall into the above category (even newbies with a needle phobia) will NOT they can plainly see their future with disabilities without Tysabri.

As for my own Tysabri saga with Kaiser So. Calif. not getting on board with No. Calif. Kaiser, my neuro called me late Thursday and advised me of the following: her boss - the Chief of Neurology - in her home office in the S.F.V. (HUGE offices in P.C. with an adjoining Kaiser hospital and every single med. specialty you can think of) got involved a few weeks ago as I believe the patients were screaming for action re: Tysabri and the TOUCH program to be instituted, in addition to the demands that we be referred outside the network for evaluation and the complaints & grievances were piling up. Further, she told me she has 5 other patients (among her many MS patients) that are also demanding Tysabri as they too are on the verge of becoming SPMS w/o relapses.

Could all of the above been due to other outside activities forcing Kaiser's hand? I really don't know...

The good news is she has been in contact with my Kaiser member services rep, MSactivesource, the Biogen rep servicing their area, and they are working on coordinating the ''in-servicing/training".

The bad news is that she told me that this will 'probably' not be completed until mid-October as all of the neuros, and all of the infusion centers (along with their personnel) have to be scheduled together, thus the delay. But she also said IF it's completed sooner than mid-October, I will be immediately advised.

At least it's a start, I just pray I can hold on to my dx of SPMS with relapses until then, and that she does not upgrade my dx when she evaluates me in October and we go over all the enrollment forms.

I still don't know if they have changed the current status of denying authorization for Tysabri as being 'experimental' under the Sr. Advantage Plan (Medicare HMO), and I'll be following up with Kaiser tomorrow.

On a side note, I received an 'approval letter' from Kaiser yesterday to see an outside-of-the-network neuro that can prescribe Ty for me once evaluated and eval of my recent MRI (which according to my neuro had "changes", well duuuh), after the Chief of Neurology at Kaiser reviewed my medical records. The earliest appt. I could get with the MS specialist outside of Kaiser was 10/31! I refuse to cancel that appt even though Kaiser is "starting" to come around, as I'm on a waiting/cancellation list for an earlier appt.

10/31......and people are wondering about patients and Tysabri therapy??? I have never before waited over 2 months to see a neurologist due to him/her being booked solid in advance........ does that give all of you any idea regarding patient demand?


Lauren :)

Saturday, August 26, 2006

My continuing Tysabri/Kaiser So. Calif. Saga...more on that tomorrow, but right now, I need to update my Blog regarding some exciting (hopefully) events that occurred yesterday. A very nice and kind gentleman/reporter from the Wall Street Journal that has been following Tysabri's return to the market and who covers healthcare, read my Blog re: Tysabri and the insurance/Kaiser So. Calif. problems I'm having, wrote to me and asked me if I might be willing to talk about my experience. Now, even though I'm currently to a w/c, you can all 'bet your sweet bippy" that I jumped at the chance to set the record straight with the true and correct facts about Tysabri.

Being a little leery of the press, after Tysabri's good name has been repeatedly damaged and dragged through the mud by various groups (outlined below), I came right out and asked him if he would write a fair and unbiased article about Tysabri, to which he answered "yes", so I trusted him and took him at his word. Call me naive, but I still believe there are honest, caring, and giving people in this cruel and cold world (and I know this to be true as most of my friends are honest, caring and giving)...and I am praying he is one of them. I'm also praying that I am not mis-quoted, but it is out of my hands now, and what will be-will be.

The following are some of the topics I "touched" on (haha), but my main emphasis was Tysabri Equals Hope for Patients (that's the bottom line). Okay, ready? Fasten your seatbelts for the subjects covered in our TWO hour phone interview:

The AC hearings; patient demand for Tysabri is high (roughly 60-65% now, 70-85% by end of 2007-imho); Tysabri will be the leading MS drug for 5-10 years until something better is available to MS patients; we have been waiting over a decade for an efficious therapy; Tysabri is 68% efficious or 2/3's superior over the "possible" efficiacy of the ABCR's; the side effects I experienced from the ABCR's; minimal risk (if at all) of PML in dx'd MS patients with non-compromised immune systems administered as a monotherapy; the effects I experienced with Tysabri after my first infusion treatment in early 2005 (yay!); my severe relapse in 6/05 w/o Tysabri's protection; further disabilities being incurred w/o Tysabri (he is going to review the links listed on my Blog, incl. my video testimony on the MSpatientsForChoice website); Tysabri being first line and/or second line therapy for MS (per indications on label, FDA formal statement and statement by Dr. Richard Katz of the FDA in a C/C); incorrect information damaging Tysabri's good name by various media articles, uninformed patients on MS boards and forums; bad-mouthing and unscrupulous tactics by Teva and Serano (Tysabri's competitors); uninformed or lazy neuros; the TOUCH program; patients switching to Tysabri now and in the loop and waiting for ins. authorization; ALL the ins. problems I'm having with Kaiser in So. Cal.; other ins. issues re: Medicare HMO's (Note: he wanted to know which ins. co's are approving Tysabri so I named a few and emailed him a list of more that had been researched by a friend of mine (note: he said he might call again with wanting more ins. co's that are approving/authorizing Tysabri and anything else he can think of); ins. co's claiming Tysabri is "experimental" to get out of paying now; healthcare costs of untreated MS patients (i.e., hospitalizations, ineffective med. treatments for relapse, p.t., in home services/care, medical equipment such as w/c's, walkers, canes, crutches, etc.); Tysabri being less than Twice as expensive as the ABCR's but More than Twice as Effective; Tysabri being continously dangled like a carrot, just out of reach, from needy patients; the obstacles we have overcome to get Tysabri back and now the roadblocks by ins. co's.; QoL improvements that none of the other therapies can claim; Elan Corp. (who discovered Tysabri) is a little Irish company with a BIG heart that CARES about PATIENTS; Tysabri is only the 2nd drug to be re-approved by the FDA; insurance co.'s and Tysabri's competition putting $ profits before the MS patient's well being; some neuros taking a "wait and see" attitude out of fear of being sued (absurd) and thereby placing their patients at risk for a relapse/disabilities, increased lesion load (Time is Brain); WS needs to wake up to the fact that the avalanche of Tysabri patients is on the verge of being here (he wanted enrollment figures and I told him Biogen and Elan have not released that info, but both were "pleased" with the Tysabri enrollment data); WS has wronged Elan terribly (not BIIB) and needs to promote the upgraded status of Elan as Tysabri IS about to take off (included in their pipeline are Alzheimer's Disease/AAB-01 on the way for the baby-boomers about to hit the nations' healthcare system, Nanocrystal technology, Tysabri for future use in Crohn's Disease with a hopeful filing of the BLA for Accelerated Approval at end of 2006 as ENCORE trials completed-with good data incl. QoL-RA, possibly even including severe asthma therapy- did everyone notice here that little Elan's research/pipeline products and foundation is built upon and geared towards the patient??? Helllllloooo); hopeful lifting of the patient registry in 5 yrs along with the TOUCH restrictions; suffering and non-suffering patients should be the HIGHEST priority re: all of the above; and that each day w/o Tysabri is a day lost to MS.

I ended the interview again with Tysabri Equals Hope for Patients in providing them with an opportunity to regain some, if not all, of their life back that MS has taken from them.

I'm looking forward to reading his article, as are my many friends.


Thursday, August 24, 2006

Thursday, Aug. 24, 06 My Tysabri/Kaiser So. CA SAGA continues....Still calling around for a certified neuro near me...seems my little 'hole in the wall' area was left out of the "TOUCH" program in-servicing area for neuros by Biogen. No return call yet from their rep that I placed yesterday. I called my neuro at Kaiser So. Calif. as she requested I check with her every 2 weeks (errrr, sorry-I'm calling every week since it's my life on the line re: Tysabri) to see if any progress has been made with the training. Left message for her to call back (LMFCB before the weekend).

Some interesting info I found out yesterday from the Kaiser Member Services gal assigned to assist me in my search for info, and processing of forms, throughout the Kaiser maze: she told me yesterday she placed a call to No. Calif. Kaiser's Pharmacy (that makes decisions or can answer detailed/complicated issues re: drugs and the formulary, including Medicare related issues), and she hopes to get back to me Friday or sometime next week.

She also mentioned two very interesting items: 1) the "gag order" placed on Biogen (from looking in my computer file I would imagine) had to do with the Biogen pharmacy seeking information about me as a MS patient; 2) No. Calif. Kaiser is certifying neuros and infusion centers, but not currently So. Calif. Kaiser. When I asked why not, she said she didn't know, but the Biogen reps can contact the neuros (I asked her if she would repeat that last statement, and she did!!!).

So the questions that beg to be asked are: Why haven't they scheduled in TOUCH training for neuros and infusion centers down here yet, and why is No. Calif. Kaiser receiving preferential treatment, while So. Cal. Kaiser (patients) are being discriminated against???

That's all I know for now. SOOOO unbelieveably frustrating are the new roadblocks MS patients have to deal with now, like we don't have enough on our plate in just dealing with our MS daily??? Grrrrrrr. (I know, I know, stress and MS don't mix...but tell Kaiser that!).

The long and winding road........ :/


Wednesday, August 23, 2006

Wednesday, August 23, 2006. Yesterday, I scheduled an appointment with a different neuro that is TOUCH certified to write Tysabri scripts (wanna hear something strange? He was the very first neuro I saw back in 1976 when I received my dx! Whoa). He is outside the Kaiser network, and I am currently waiting for the referral (going though the Kaiser maze again from my neuro at Kaiser to Member Services as this should help keep my costs down, we'll see though). I also need to get my MRI film (which was done last month), for my outside neuro to review when he sees me on 10/31!! I am on a cancellation list for an earlier appt. (Damn Kaiser!-oops). I also called the Biogen rep that services So. Calif., and left a message for him to call me back re: neuros names and phone numbers that he knows are certified to write Tysabri scripts.

I'm still searching for a TOUCH certified neuro near me that can evaluate me prior to 10/31, because I'm afraid that date will be too late for me to remain eligible for Tysabri, as it is for "relapsing" forms of MS, and my disease process is very active (I am currently SPMS with relapses, and I pray my dx doesn't change by 10/31).................. :/

Hey Corley, I see your comment on my blog! (I'm surprised anyone even read my first post!! LOL). You're sooo sweet for making my day with such kind thoughts and well wishes..thank you!

More on my Tysabri Saga later. Lordy, I just wanna feel that needle in my arm, and Tysabri coursing throughout my body...stopping my MS in it's tracks!


Monday, August 21, 2006

Hi all, My name is Lauren. I have been living with MS for 30+ years (lucky me!). I have been on Avonex and Copaxone, oral and IVSM (which no longer work for me) and Novatrone is not an option for various reasons. I had one dose of Tysabri in early 2005, and after it was removed voluntarily by the manufacturers, I suffered a severe relapse in June 2005 that has left me w/c bound and homebound. I was RRMS for 29 years (I was amazed and grateful I remained RR for so long, my neuro was shocked and baffled-lol) up until last year when my neuro upgraded me to SPMS with relapses. I am currently waiting to go back on Tysabri, as it is the only MS therapy that stopped my attacks, improved my symptoms dramatically within 2 weeks of the infusion, and provided me with a better QoL. It was re-launched on 6/5/06, and the TOUCH program went into effect on 7/18 (scheduled training of neuros and infusion centers) with enrollment forms being accepted and processed by Biogen on 7/19.

I will support anyone's choice of MS therapy, no matter what that choice is. I would, however, like to set the record straight due to any misconceptions and/or mis-information regarding Tysabri. I also testified at the FDA AC hearing via videotape on 3/7/06 in an effort to bring Tysabri back to MS sufferers that want and need it, like I do. If you would like to view my videotaped testimony (try not to die laughing, ok? LOL), it's on the homepage of the website: (of which I am a very proud member).

In a nutshell, for me,Tysabri's 68% superior efficacy, improvements in current disabiities, safety when used as a monotherapy (by itself as a sole therapy), improvements in Quality of Life (which no other MS drug can claim) and protection from further relapses: the benefits of Tysabri far outweigh the very small risks of contracting PML (.01% or 1:1000-probably less than that, actually). It is more of a risk for me NOT to have Tysabri, as Tysabri protected me from further attacks/relapses.

For more information on Tysabri, see ,, and/or

As to Tysabri being used as a First Line AND/OR Second Line therapy, NOTE: Dr. Richard Katz of the FDA specifically indicated in his Conference Call that the language in the FDA formal statement re: Tysabri's use was to be decided by the treating doctor and the patient (as it should be) and the FDA's formal statement[1]was intentionally left open for indications of use as First AND/OR Second line therapy. In order to bolster this argument, I highlight in bold the text from the FDA approved label for Tysabri which states in part, "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."


Tysabri = to shelter (abri in French). Is that the perfect name for a MS drug that "shelters" patients from further relapses & disabilities, or what? :)

If you have a neurologist that has taken a "Wait and See" attitude, ask yourself, "What is he/she waiting for? For you to get worse???

For any MS patient or treating neurologist reading my comments, I ask you this question: If "Time is Brain", why are neurologists willing to allow their patients to suffer relapses, increased likelihood of further lesion load, possible permanent disability and possibly develop "black holes" therefrom, BEFORE they will prescribe Tysabri to protect their patient by 68% or 2/3rds efficacy over the 1/3 possible efficacy of the ABCR's?

Please feel free to leave me a comment. I do try to check my blog site daily (today is the first day of my blog, as literally created my first entry here late late late night (did I mention late?). You can also reach me at: LGLBGL2003@AOL.COM, (the Legal Beagle...laughing). You can also visit my homepage at:

I plan on keeping a diary here, once my infusions start. Right now though, I am going through the "Tysabri Saga" of endless delays and run-arounds, in addition to having difficulties typing. I will try to update it daily, but if you do not see new posts from me (from time to time), you'll know why.

Being diagnosed with MS is not the end of the world (at the time I was dx'd in 1976, it came pretty dayum close though!!!). Whatever any of you decide to do re: your choice of therapy, I wish you only the very best that life has to offer. May you always be blessed, Lauren.

I am a very proud member of:

additional links:

My Home Page:


WLF Published Legal Opinion Letter:

Tysabri Info & The TOUCH Program:

Elan (Discovered Tysabri) & QoL News:

What Is Multiple Sclerosis?:

MS Chatters (TONS of Links about MS):

National Patient Advocacy Foundation: