Extremely Restless

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby maynaka » Thu Aug 17, 2006 1:36 pm

This is in response to the first posting asking if anyone had an infusion yet. But after reading the last three pages of nightmares that everyone has experienced, I am almost embarassed to say that I had no problem with my insurance and have had my first infusion.

I have private insurance that I continued when I went on permanent disability in 2003. It took about a week after the doctor's office called before it was approved. I had my first infusion on Monday, the 14th. Happily, there were no side effects. I did notice I didn't feel the intense soreness I normally feel in my calves by early evening. It could have been wishful thinking on my part that it had an effect quickly. I was diagnosed in 84, walking and balance are extremely difficult for me.

I will keep you all in my thoughts and prayers.
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Postby Ronnie » Thu Aug 17, 2006 1:50 pm

Dear maynaka:
HI! We have Community First HMO through my husband's job as a Faculty member at San Antonio College. They actually did pay for and allow me to have two infusions on I/28/05 and 2/25/05, and I had very good results, no noticeable side effects and improved vision! I believe that my walking was positively affected by the medication as well, even after only two months of treatment!

Then, of course, they pulled the drug, went through hoops and played haki sack with our hearts.

Now Community First has sent me two denials of authorization, claiming the drug is 'experimental', and I am marshalling my wits to fight them. It seems that some people, like yourself, are not having trouble getting your medication. I am wondering if this is partly attributable to the nature of Texas and the various loopholes and grandfather clauses and whatnot which have made my life here so different than it was when I lived in Illinois, long ago.

If it weren't for the fact that I doubt any medical insurance would be reasonably affordable or obtainable if I tried to relocate now, I would move back to Illinois in a heartbeat. I would probably then find out that everything is more the same everywhere than I realize.

But, do you live in a different state, not Texas? Are you in New England, or the Midwest, or perhaps on the West Coast?

The infusion nurse at my neurologist's office maintains that legally, they will have to give us the medication eventually, but nobody will do anything until Medicare and Medicaid set their policy for payment.

Geez, isn't this an interesting adventure we're having?
Love,
Ronnie
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Postby amelia » Thu Aug 17, 2006 2:00 pm

I thgouht I read earlier in the post or another that Medicare and Medicaid are not changing anything they did before the drug was pulled. I put DR call in today, late afternoon, to see where Gary stands on getting his first infusion. I'll let everyone know when we hear something. He is Medicare only. But we have A-Z hahaha. :lol:
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Postby maynaka » Thu Aug 17, 2006 2:00 pm

I live just outside Chicago; my doctor is at Rush University. What doctor did you go to for your infusions before you moved?

Karen
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Before we moved...

Postby Ronnie » Thu Aug 17, 2006 2:18 pm

Dear Mynaka:
That is the irony of it all--we moved here in 1992, while I still had the diagnosis of 'possible ms'; and when I did have infusions, they were administered here, by the same nurse who will do it again, and covered by the same insurance company who now states that Tysabri is 'experimental'!

My neurologist in Champaign, Illinois, from 1990-1992, was Dr. Helfrich. He was kind of abrupt in his manner, but he went ahead and put my name into the Betaseron lottery when it came out, even though we had already moved away and lived in Texas by that time, and I didn't even get a definite diagnosis until 1994!

My neurologist now is Dr. Ann Bass, who has always told me everything she could about my condition, new medications, any relevant research, and who gives me several options and recommendations but always lets me choose what I wish to do.

Since we have lived in Texas, we have had several different HMOs. We had Pacificare, Prudential, Community First, and for a time Blue Cross/Blue Shield. We don't shop around on purpose. Every year or so the State of Texas/Alamo Community College District/San Antonio College presents us with a different list of approved providers. Sometimes the one we had will disappear from the list. Sometimes the doctors we have will only appear on lists with one or another of the providers.

All of this makes it complicated. Right now, from what I understand from Don, the infusion nurse, he is not able to infuse anyone in his office, because there are no insurance carriers who are allowing the doctor to prescribe the drug (because they won't cover it).

As for the Medicare/Medicaid thing, all I know is what Don said, which was that the government has to decide what amount they will use to cover the medication. The drug company tells them what the drug is supposed to cost, and Medicare/Medicaid decides how much they will pay for it. That is what they have to do now, according to Don.

As I said, Texas seems to have a lot more wiggle room in the laws, so maybe other states aren't allowing this to happen; althougth it sounds like Lauren is having a time of it in California!
Take care,
Ronnie
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New information!

Postby Ronnie » Fri Aug 18, 2006 2:19 pm

Dear folks:
I got a call from Don Jordan, the infusion specialist at my neurologist's office. He says that he spoke with a woman in the Community First HMO offices, and she indicated that the Tysabri information in the database had evidently not been updated to reflect that the FDA had approved it for use AGAIN, so Don recommended that I wait for a few days and he will update me when she calls him back with new information.

Wasn't that nice of him to call me?

Love,
Ronnie
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For bobtheisen, and hi to all...

Postby msladyinca » Sat Aug 19, 2006 6:37 pm

Bob, this is what I have been able to find out re: GA infusions from my contact: "the only place i know that is infusing in Ga is the Multiple Sclerosis Center of Atlanta which has two locations. In Ga I don't believe Kaiser actually runs any of the large Atlanta medical centers, they have quite a few hospitals around the city. I can try to find out if Kaiser actually had an infusion center of their own. They have a huge HMO/PPP operation in Ga."

When he is able to provide me with more info Bob, I'll post it here for you.

Hi to everyone else...thank you Ronnie for keeping us up to date re: your ins. appeal.

As for me, I'm still getting the run-around from Kaiser So. Calif, and I keep getting transferred from one dept. to the next (which always conveniently turns out to be the wrong one). I'm so exasperated by them. (I almost typed exascerbation).

I think I need to look for a neuro outside the network without a referral, if I am ever going to get my Tysabri that I so desperately need to stop my attacks :cry:

That's all for now.

Lauren
Last edited by msladyinca on Sat Aug 19, 2006 8:07 pm, edited 1 time in total.
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The Quest for Tysabri

Postby Ronnie » Sat Aug 19, 2006 8:00 pm

Dear Lauren et al:
Keep at it, girl! One way or another, someone has got to start giving us the meds that we know are legally our right! And you have the right to have a neurologist who is qualified to prescribe the medication which we all know is legally available and has been shown to be efficacious!

I meanwhile have received a letter which informs me that Community First Health Plans has received my Appeal and that I can send any additional documentation to them. Don will probably be calling me sometime next week when he hears from the woman he spoke to in the HMO offices, and if I haven't heard from him by Monday afternoon I plan to give him a call (this is my version of being patient).

Something has got to work!
Take care,
Ronnie
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Neuro appt....

Postby msladyinca » Wed Aug 23, 2006 3:33 pm

Hi Ronnie, all....the latest in my Tysabri/Kaiser So. Calif. saga is I have an appt with a certified neuro outside the Kaiser network for 10/31 :cry:
That was the earliest he had, and they put me on a cancellation list...SIGH.

Interestingly enough, he was the very first neuro I saw in 1976 for my numb hand.

I'm in the process of getting the referral through Kaiser to keep my costs down (not sure this will help as Kaiser does not cover Tysabri under my Sr. Advantage Medicare plan). I am also in the process of obtaining my MRI done last month for the new neuro to review, and I also left a message with the Biogen rep servicing my area to see if he could give me some names and phone #'s for certified neuro's in my area.
(which has NOTHING to do with Kaiser's gag order).

At least I have the name and number for the "local" Kaiser member services rep helping me through this maze, and 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.

That's all I know for now.

Lauren
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The Quest for Tysabri

Postby Ronnie » Wed Aug 23, 2006 6:21 pm

Dear Lauren:
Yay! It sounds like you are making progress! I am not being sarcastic, because it sounds like you are overcoming roadblocks and hurdles galore!

This is indeed taking longer than we expectied! Yesterday I called Don, the infusion nurse from my neurologist's office, to see if he had heard anything yet. He said the woman from the HMO hadn't contacted him, and he expected it would probably take awhile. He cautioned me to be patient!

Since I have to start teaching classes on Tuesday of next week, I am trying to focus on setting up lesson plans, and reviewing Photoshop CS2. At least that will distract me for awhile!
Good luck!
Ronnie
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Ronnie, ONE word for "being patient"..

Postby msladyinca » Wed Aug 23, 2006 6:44 pm

GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR! :x Is that a word? ;)

I'll keep all posted (har har)

Lauren
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A word...

Postby Ronnie » Thu Aug 24, 2006 10:02 am

Dear Lauren:
I think you might be challenged in a Scrabble tournament for that one.

My grandmother used to say, "Oh, for the goodness sake!"

She was a very mild, but formidable person (she lost her right hand in a laundry mangle when she was in eighth grade, but managed to become a stenographer/secretary--as my cousin said when she was three, "Is that why they call it shorthand?").

Good luck!
and, Good grief! Augh! Arrgh! Curses! Nie!
Ronnie
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Hi all...I had a VERY interesting day last Friday...

Postby msladyinca » Sun Aug 27, 2006 11:18 pm

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.

Lauren

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.
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Re: Hi all...I had a VERY interesting day last Friday...

Postby HarryZ » Mon Aug 28, 2006 6:29 am

Lauren,

You certainly did cover every angle about Tysabri in your interview :)

I am, however, going to question your efficacy comment of a 68% improvement of Tysabri over the CRAB drugs. On the Brain Talk MS Forum (now having some real technical problems for the past month or so) a very knowledgeable MS patient who posts often on that site, compared the CRABs to Tysabri, using "absolute" numbers in the two trials.

He came up with a Tysabri efficacy improvement of 12% over the CRABs which is likely far more accurate than that 68% being floated around. While I have never been a fan of the CRABs due to their very limited effect on MS, I also caution some of the numbers that Biogen/Elan claim with Tysabri. I believe that several insurance companies feel the same way and is one of many reasons they are not jumping into Tysabri approval...especially with the associated price tag.

While a number of MS patients can't wait to try Tysabri, I'm sure many are running into the same kind of problem you are because of the current unsettled situation with this drug.

I hope in the long run it all works out but believe there are going to be a lot of bumps in the road along the way.

Take care.

Harry
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Hi Harry...

Postby msladyinca » Mon Aug 28, 2006 2:26 pm

You are the consistent gentleman, as always :) ....how did I know you would question me on that very topic? ;)

Okaaaaaaay, here ya go:

First, there have been no 'head to head' comparisons of Tysabri vs. the CRABs...and I never indicated that...therefore your friend's "absolute" comparison is meaningless to me (no disrespect Harry, but if it's not published in the opinions of the NEJM, for me personally, the 'comparison' holds no water).

See: http://www.nationalmssociety.org/tysabri_qanda.asp "Frequently Asked Questions and Their Answers Concerning Tysabri

Updated July 25, 2006

Q. How effective is Tysabri?
A. In a two-year clinical trial of two years' duration (the AFFIRM study) of Tysabri alone, 942 individuals received either Tysabri or inactive placebo for more than two years. The treated group experienced a 42% reduced risk of progression of disability, a 68% reduction of clinical relapses, and an 83% reduction in the development of new or newly enlarging MRI-detected brain lesions. Tysabri also reduced the mean number of enhancing (active) MRI lesions by 92% after the first and second year. These results were described in a published paper (The New England Journal of Medicine 2006;354:899-910 ).

Q. Is Tysabri better than the other available MS therapies?
A. Tysabri has not been compared head-to-head against any other approved MS drug, and that is the only way to truly compare the effectiveness of the MS drugs. However, generally clinicians agree that the immunomodulatory drugs approved for use in MS reduce the rate of relapses by about one-third. By contrast, after two years Tysabri reduced the rate of relapses by about two-thirds as compared to placebo. The investigators also reported that Tysabri reduced the risk of sustained progression of disability over those two years. There is some evidence that other approved MS drugs also slow disease progression.

Good to hear from you again. You take care too Harry, best wishes always,

Lauren
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