Extremely Restless

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

Postby amelia » Tue Aug 15, 2006 7:49 am

The funny thing about all of this is if your are covered and DON'T take anything for your MS, your chances of eating at the insurance co. profits yearly are quite good. MS, so I have been told, is generally broken up in thirds, although the CRABs may have changed this slightly. 1/3 will go on with little or no trouble, 1/3 will need some type of assistance in the latter years, crutches, canes, walkers, etc. and 1/3 will wind up in the bed or a wheelchair. AND THE INSURANCE COMPANY WILL PAY THE WHOLE KIT AND KABOODLE WITH ALL THE HOSPITAL STAYS AND PREDS. Do the math and see which one comes out cheaper! Not to mention the quality of life the MSer has.
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Plans of Action...

Postby Ronnie » Tue Aug 15, 2006 8:26 am

Dear Folks:

I took a breather here, to collect my thoughts and decide my next series of steps, and then I came back and read some more of the forum postings...

I don't know how you guys feel, but after several hours of intense activity, I seem to need a couple of days to recover! But, I am seriously considering sending a note to some crusading journalist with a weblink to this site, so that my efforts and the efforts of others will augment and increase the effectiveness of our struggles.

I also have to check back with the neurologists office to see if there have been any new developments! When I asked if they had received the cc: indicated at the bottom of the original letter from Community First HMO, neither doctor's office had; I can only assume the insurance company sent the letters to the doctors by a slower carrier, perhaps via Newfoundland.

All my best to everybody! Adversity builds character, remember, so we must all be a bunch of characters by now...
Ronnie
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Postby sh8un » Tue Aug 15, 2006 10:24 am

Oh Ronnnie...I love the way you think. Taking action...we SHOULD do that more. I am not saying that none of us do but we just don't write to talk about it mcuh. I am sure there is a lot we can do together. Look at the site registration numbers...they increase by the day.
Hope it works Ronnie,
NN
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Tysabri Ins. Coverage...this is what is happening with me..

Postby msladyinca » Tue Aug 15, 2006 1:32 pm

I have Kaiser Permanente in So. CA-the plan I have is Kaiser Sr. Advantage (Medicare Participating HMO). Medicare will cover 80% of the infusions under Part B & D, BUT, if you are in a Medicare HMO, THEY (the HMO) assume the Medicare benefits A & D, and unless the participant specifically pays their Medicare premium monthly to keep Part B, more than likely the HMO assumes that benefit too. This is what happened to me, and I have ZERO recourse through Medicare directly for any kind of reimbursement for Tysabri - which again - straight Medicare covers it 80% through Parts B & D.

Now here is where it gets interesting (much to my chagrin), Kaiser is not allowing any Biogen reps to contact the neuros within the Kaiser network to schedule the training/in-servicing through the TOUCH program as mandated and approved by the FDA until Kaiser "Corporate" approves the TOUCH program. K-Corporate met with the Biogen reps on July 27, and the TOUCH program was presented to them. K-Corporate had a "problem" with the enrollement forms and needed to go over them with Kaiser's Legal dept. K-Corporate met with K-Legal on 8/1 and I was advised by FOUR different member service reps from Kaiser that "Tysabri was approved and placed on their formulary on 8/2, BUT it is not covered under the Sr. Advantage Plan" which in my case, includes Parts B&D. NOT ONE SINGLE PERSON COULD TELL ME WHY IT IS NOT COVERED UNDER KAISER SR. ADVANTAGE...NOT ONE....sooooo....

I demanded a referral to an outside neuro that is certified and can write a script for Tysabri and send me to a certified infusion center. I was advised that I needed to speak to one of their pharmacists, SAY WHAT? Ok fine whatever...then I get a call from one of their pharmacists indicating they can't help me if I don't have a script for the med....OKAY, HOW AM I GOING TO GET A SCRIPT FROM MY NEURO IF SHE HASN'T BEEN CERTIFIED THROUGH THE TOUCH PROGRAM YET? HEEELLLOOOO?

And to top things off, Kaiser has placed a "gag order" on Biogen reps, indicating they cannot talk to Kaiser patients re: Tysabri and are to be referred to their neuros for further information. THEN I call my neuro who knows nothing, even after calling the Head of Neurology in her dept., and I was told to call back "every couple of weeks" to find out if there are any updates....yeah right, as I sit here declining in my disease process...

Time for filing a "Grievance & Complaint" form and contacting Kaiser's patient advocate, as well as PAF...why are they allowing patients to decline? Giving us the run-around? Money profits over Patients...that's why.

Bye for now (God help you if you have Kaiser - particularly So. Calif and their Sr. Advantage Plan)...Odd isn't it that Kaiser in GA is infusing patients already! UGHHHH. This makes me so very angry :x and SO VERY sad :( :( :(

Lauren
Last edited by msladyinca on Wed Aug 16, 2006 12:57 am, edited 1 time in total.
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Postby amelia » Tue Aug 15, 2006 2:17 pm

Lauren,
@#$%^&*())(*&^%$#$%^&*() to insurance companies. Maybe this is why not many people are posting and saying they have actually RECEIVED there infusion. We have yet to hear from our neuro. Now it makes me wonder. Gary has Medicare Part A-Z! We were going to drop the D, but now I don't know.
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We're just gonna have to keep on bugging folks...

Postby Ronnie » Tue Aug 15, 2006 3:36 pm

Dear Lauren and Amelia:
I took my last prednisone yesterday, and the infusion nurse is out of the office until tomorrow, so I am using today to regroup. Meanwhile, I read your posts and realize we are all being stonewalled!

I sent a link to this site to a reporter at the San Antonio Express-News. He is semi-retired, but his regular column still runs once or twice a week, and he runs down problems and finds solutions. He has, in the past, looked into the prevalence of ALS in the area surrounding a hazardous waste site on a former airforce base, for instance. I sent him a note asking him to look at this thread, and if he deems it news worthy or knows someone who should look into, I would appreciate it.

Then, tomorrow, once I have spoken with Don and my neurologists office, I will drop in at the local NMSS office. I will also start surfing websites, and trying to find some more answers. I will also keep up with postings here!

The louder we get, the better chance we have of getting heard!
Take care,
Ronnie
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Postby amelia » Tue Aug 15, 2006 4:14 pm

thanks to you Ronnie. I hate you are going through this, but we all were sitting around THINKING we could get Tysabri since the FDA approved it. Gee, looks like we were wrong.
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Postby batpere » Tue Aug 15, 2006 5:04 pm

amelia wrote:The funny thing about all of this is if your are covered and DON'T take anything for your MS, your chances of eating at the insurance co. profits yearly are quite good. MS, so I have been told, is generally broken up in thirds, although the CRABs may have changed this slightly. 1/3 will go on with little or no trouble, 1/3 will need some type of assistance in the latter years, crutches, canes, walkers, etc. and 1/3 will wind up in the bed or a wheelchair. AND THE INSURANCE COMPANY WILL PAY THE WHOLE KIT AND KABOODLE WITH ALL THE HOSPITAL STAYS AND PREDS. Do the math and see which one comes out cheaper! Not to mention the quality of life the MSer has.

That is, of course, if you can stay employed to get the insurance to pay for it.
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To Amelia and Ronnie...

Postby msladyinca » Tue Aug 15, 2006 5:28 pm

hi Amelia, first, don't drop anything from Medicare until you speak with a Medicare rep to confirm which Part you will need for 80% coverage of Tysabri...I believe under Part B if it is submitted as a "procedure", i.e., infusion, it's covered 80%. Under Part D, confirm that Natalizumab (Tysabri) is a covered med for MS: 1-800-MEDICARE or
(1-800-633-4227), TTY: 1-877-486-2048...24 hours a day, 7 days a week.

For Ronnie, thanks so much for sending your semi-retired friend the link to this thread..., maybe - JUST maybe - the horrible press against Kaiser Permanente in So. Calif (specifically no coverage for Kaiser Sr. Advantage members-the ones that need the most help) are being denied coverage for Tysabri, and further, that Kaiser in CA's MS patients are suffering more relapses and more disabilities while we wait for them to get their act together re: the TOUCH program will spur them into immediate action. As it is now, and has been in the past, I guess they just don't care that they are doing more harm to their members by needlessly withholding Tysabri, instead of providing the most superior and effective MS therapy (by cutting the relapse rate by 68%) to become available in over a decade, help them have a chance at a better Quality of Life, reduce their suffering and disabilities, and allow them the protection from getting worse.

I feel like someone just kicked me hard in the stomach, and I've lost my breath. I've been fighting everything and everyone that has thrown a roadblock into Tysabri's return for over a year and a half, and I've put more than my fair share of effort into this fight...but now I'm exhausted and my MS is progressing so fast, I'm afraid that my MS will be upgraded to SPMS without relapses, making me ineligible for Tysabri. Sheesh, I even had to educate my own neuro about Tysabri - back in 2001 when it was called Antegren at that time.

People with MS are dying from MS complications (I've lost 6 friends to/with MS in the last 2 years) I am tired of waiting....I get even MORE frustrated and sad when well-meaning people say things like: hang in there-it should only be a couple of more weeks, next month, by the end of the year, blah blah blah. Time is Brain!!!

I NEED my Tysabri NOW...each day without Tysabri is a day lost to MS...I needed it back in March 05, in order to stop the attacks. I've lost count of how many relapses I've had since June 05, when a very bad one put me in this w/c. Note I said need, not want.

I apologize for the rant....I hope the Medicare info above helps someone.

I'm off to do more crying.

Lauren :cry:
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Take heart!

Postby Ronnie » Tue Aug 15, 2006 5:38 pm

Dear Lauren:
Crying can help sometimes, but don't overdo it! I did some crying last night. Now I am thinking.

You are doing a lot of work, investigating and chasing after your ins. folks. You have given me and a lot of others here some great pointers, information which was hidden to us, and will help us in our fight with our own insurance providers. Maybe some of this will actually result in some action on their part! Maybe it won't. But not because WE did nothing. You, I, Amelia, even HarryZ have done something to try to take OUR LIVES BACK! And we will continue. So, spit in their eyes, those snarky insurance dweebs.

And now off we go, into the fray...
Take care!
Love, Ronnie
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Still working on it...

Postby Ronnie » Wed Aug 16, 2006 2:21 pm

Dear Lauren, Amelia, HarryZ, et al:

I started out today with a list of people to call, and hit snags. The customer rep at Commy 1st, Raoul, is not in today, and nothing new is listed for my account. There are Advocates working for the NMSS society office in Austin, Amber and Kim, but they are busy in a meeting this afternoon. The infusion nurse, Don, is returning to the office tomorrow (I was mistaken, thought he was coming back today). So, until I can speak with these people, I have no new information! Aaaaargh!

But, on a lighter note, this weekend we went to an Autograph Seekers convention downtown and got the signatures of Buzz Aldrin, Al Worden, Gene Kranz, and Clint Howard! I actually spoke with people who walked on the surface of the moon! Getting Tysabri can't be THAT hard!

I will let you know what happens tomorrow when I hear from Don, Raoul, Amber, and/or Kim!
Take care, and good luck,
Ronnie

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Postby amelia » Wed Aug 16, 2006 2:28 pm

AHHHHHHH! Patience. Something I am NOT known for having.
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Postby bobtheisen » Wed Aug 16, 2006 9:57 pm

Hi Lauren

I am sorry to hear of all the problems you are having getting tysabri.

Do you know where in georgia kaiser is tranfusing patients?

Take Care, Bob
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Hi Bob..

Postby msladyinca » Wed Aug 16, 2006 11:09 pm

Thank you, and in answer to your question, no I don't. My contact in GA is currently out of town. :?

Btw, I just ran into Harry Z on another message board...he is SUCH a gentleman :D

Thank you Ronnie for your attempted follow up efforts, keep me posted (pun intended-heehee), and Amelia-you have a tendency to say what I feel! :wink:

Going to sign off now...ny'tol,

Lauren
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Keeping Y"all (Texan phraseology) posted...

Postby Ronnie » Thu Aug 17, 2006 1:00 pm

Dear Lauren, Amelia, Harry, et al:
Guess what I got in the mail yesterday? Yet ANOTHER Denial of Service from Dr. D at Comm'y 1st HMO. With much more information in a much smaller type font, so it still fits on one page.

The additional forms, however, were several more pages. This time I got the cover letter, and FOUR attachments, listed at the bottom of the cover letter (so convenient) as:
"Attachments: 1) Appeal of Adverse Determination Form, 2) Notice of Adverse Determination, 3) Request for Review by an IRO, 4) Appointment of Representative Statement."

The letter also states, "Please be informed that you have the right, at any time, to contatct the Texas Department of Insurance at 1(800) 252-3439."

In the body of the letter, it states (I find this amusing somehow):
"The Community First appeal process should be followed first unless your condition is life/limb threatening; in which case, you may request an immediate appeal to an independent review organization (IRO) and are not required to comply with CFHP's internal review process. Life threatening is defined by TIC Art 21.58A Sec 2, (12) as a disease or condition for which the likelihood of death is probable unless the course of the disease or condition is interrupted. The attached information also describes the process for obtaining an IRO."

I made several copies of this lovely missive and dropped off one with the infusion nurse at my neurologist's office, and he told me some pertinent information.

Evidently, since the cost has risen by more than 20 percent, and since the Medicare/Medicaid reimbursement schedule has not been decided upon or published, the other insurance carriers are stalling. He said that he is unable to infuse anyone at the moment, although the office is set up, the personnel are trained, and everything is in place, because they can't get authorizations for anyone. They are sending out a letter to all of the patients explaining that the delay may be lengthy. He told me that he could get Tysabri, but not give it to anyone yet.

I gather that some people somewhere are actually receiving infusions. Who are you and where do you live?

I am waiting to speak with an advocate at the NMSS office in Austin, as soon as she returns my call (she is out of the office right now I guess). IF we could have a lawyer call around and scare someone, maybe we could get some action....

Image

ok, I am experimenting... I am trying to insert a pastel drawing of my eye that I did about fourteen years ago when I had optic neuritis. Did it work?
Love,
Ronnie
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