Living With MS

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

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 :)


  • At 6:54 AM, Blogger STUART said…

    Lauren- A woman with Conviction. No I did not say a convicted woman (LOL)..
    GREAT, informative BLOG you have here.. WE MUST keep people informed. WE being "THE DO'ers" of society. - All My Best - Stuart


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