WOW! What an interview I had with WSJ's Zachary Seward, it lasted TWO HOURS! Woohoo!...
He found me by researching Tysabri Blogs (he found mine: http://lauren-livingwithms-aolcomlglbgl ... gspot.com/
) and wrote to me asking if he could interview me! He was very Tysabri oriented, but from what he told me at the beginning of our conversation, he writes an unbiased opinion for WSJ's healthcare column, and wanted my opinion on everything related to Tysabri, so I gave it to him! LOL
Too much for my hands to type, but I impressed upon him the following: Tysabri Equals Hope for Patients
(THAT is the bottom line).
I'll give you the topics I "touched" on (haha): The AC hearings, patient demand for Tysabri is high (roughly 60-65% now, 70-85% by end of 2007-imho), Ty 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, Ty is 68% efficious or 2/3's superior over the "possible" efficiacy of the ABCR's, the side effects of the ABCR's, minimal risk (if at all) of PML in dx'd MS patients with non-compromised immune systems, the effects of my first treatment in early 2005, my severe relapse in 6/05 w/o Ty's protection, further disabilities being incurred w/o Ty, (he is going to review the links listed on my Blog, incl. my video testimony on the MSP4C website), first line and/or
sec. 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 info by various media, uninformed patients on MS boards and forums, bad-mouthing by Teva and Serano, uninformed or lazy neuros, the TOUCH program, patients switching to Ty now, in the loop and waiting for ins. authorization, ALL the ins. problems I'm having with Kaiser in So. Cal. (new developments on that later), other ins. issues re: Medicare HMO's (Note: he wanted to know which ins. co's are approving Ty so I gave him a list my friend has been researching-he said he might call again with wanting more ins. co's that are approving Ty and anything else he can think of), ins. co's claiming Ty 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 care, med equip. w/c's, walkers, canes, crutches, etc.), Ty being less than Twice as expensive as the ABCR's but More than Twice as Effective, Ty being dangled like a carrot just out of reach of needy patients, the obstacles we have overcome to get Ty back and now the roadblocks by ins. co., QoL improvements none of the other therapies can claim, Elan is a little Irish co. with a BIG heart that CARES about PATIENTS
, Ty is only 2nd drug to be re-approved by the FDA, ins. co.'s and Ty'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 and placing their patients at risk (Time is Brain), WS needs to wake up to the fact that the avalanche of Ty 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 Ty enrollment), WS has wronged Elan terribly (not
BIIB) and needs to promote the upgrade status of Elan as Ty IS about to take off, AD-AAB-01 on the way for the baby-boomers about to hit the nations healthcare system, Nanocrystal technology, Ty for future use in Crohn's Disease (hopefully filing BLA for Accelerated Approval at end of 2006 as ENCORE trials completed-with good data incl. QoL, RA, possibly severe asthma), hopeful lifting of 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, each day w/o Ty is a day lost to MS, and 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.
Did I leave anything out? lol
I'm looking forward to reading his article (I hope he is fair and unbiased, I hope I'm not misquoted, and no I don't know when it will come out - he said he'd let me know and also email me a copy).
I'm sure I forgot some things we talked about, but I just hope I helped in some small way suffering MS patients (like myself) be informed of the correct info re: Tysabri [including newbies], receive their drug of choice, and to try to restore Tysabri's good name.
PS: Did I mention he is a CD patient in remission that receives Remicade infusions bimonthly?!?!! (I am VERY hopeful he will write a favorable article on Tysabri)..., G'nite all.