Living With MS

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

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.

Lauren

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