Extremely Restless

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

Extremely Restless

Postby DenverCO » Tue Aug 01, 2006 8:41 pm

Is anyone scheduled to get Tysabri this month?
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Postby Cagso » Wed Aug 02, 2006 10:14 am

I just scheduled an appointment for next week to get enrolled in the TOUCH program, after which Biogen obtains approval from my insurance company. I can't wait!
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TOUCH program

Postby mick_b » Sat Aug 05, 2006 4:17 pm

Hi Cagso:

I have an appt with my neuro on the 14th. I’m going to ask to get enrolled in TOUCH also.

I think my ins co will pay because it’s infused. We’ll see. I’m from NY also. Hope it goes well for you.

Mick
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Postby Rwilkers » Sat Aug 05, 2006 8:55 pm

Hi guys. I've been watching this board for a couple of years, so I figured I would finally break down and post a message :) I'm scheduled for an appointment on the 15th to enroll in the TOUCH program and get examined by neuro. It's been a long road for me. I had two infusions before it was pulled last year and have been in constant decline since. I actually had improvement while on the drug, so I'm excited to get back on it. I'll let you know when I get my first infusion.
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Postby Arron » Sun Aug 06, 2006 1:08 am

hi rwilkers-- glad you decided to join and say hello. Good luck with your appointment and please let us know how it goes :)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby leeeeeway » Mon Aug 07, 2006 10:22 am

I am scheduled for my first infusion on the 9th...what's your schedule? We are pretty close geographically...altho I'm not sure that matters...
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Postby Cagso » Mon Aug 07, 2006 11:19 am

Mick B,

Thanks for the good wishes.

Leeeway can let us know how it works out. I guess their insurance approval didn't take very long.
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Postby leeeeeway » Tue Aug 08, 2006 9:19 am

I'm on disability so Medicare will handle this. All the approvals were handled before it was pulled in 2005 and somehow the bureaucrats did not get in it again....

I took 2 infusions at that time so I am pretty sure that this one will be fine too. I agree with Harry that there hasn't been enough testing yet but my experience the first time was very positive so I am one of the eager ones.
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Anticipation...

Postby Ronnie » Thu Aug 10, 2006 5:17 am

Dear Folks:
I have been out of touch for a while because of what my grandmother called "the vicissitudes of life"--our hard drive got zapped by a power surge (those surge protectors did help, so we have about a half of a drive left), I had to do the IV SoluMedrol and preds (it's hot down here), my father-in-law was visiting, and San Antonio schools are starting up on Monday.

HOwever, I am told my the neurologist's nurse that they will call me VERY SOON. I pant in anticipation.

My take on the whole medications deal: there are a hell of a lot of people alive in this world and functioning now, who would have been dead at forty or fifty without modern medical intervention. Will Tysabri cure me? Fat chance. But, even the CRABS kept my functioning and life quality better than it would have been, for somewhat longer, and although things haven't always been a picnic, at least I have had a life to enjoy in between flare-ups.

I feel lucky to have access to medical care from professionals who work hard to be as sure as they can be before putting me through any of these meds, who talk with me about them, and who give me several options with any information I might need to make my decisions. I can trust these people, and I can trust them to apologise if something doesn't work out as planned or expected, and I don't blame them very much at all.

When they put me back on Tysabri, I hope to feel better. If I don't feel better or if something unforeseen does begin to happen, I know Dr. Bass will immediately take steps to minimize any adverse reactions and stop any damage, and I am ok with that.

Is this courage? I don't know. It is practical, though.
Take care, and good luck to you all,
Ronnie :D
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Postby amelia » Thu Aug 10, 2006 10:38 am

Will Tysabri cure me? Fat chance. But, even the CRABS kept my functioning and life quality better than it would have been, for somewhat longer, and although things haven't always been a picnic, at least I have had a life to enjoy in between flare-ups.

Amen Ronnie!
It seems to be the next best thing right now. In the next couple of months, years, etc, there will be something a little better and Tysabri will be a thing of the past. We just got back from a short vacation to see our daughter. We should be hearing from our DR soon to go to TOUCH. Looking forward to see what comes of all of this.
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Ahhh--The Plot Thickens!

Postby Ronnie » Mon Aug 14, 2006 5:55 am

Dear Folks:

Ok, bet I will get in trouble for this (like anything would be worse that what we are going through already, right?)--here is the body of a letter which my HMO sent me on Saturday (if you ever want to give somebody bad news, but prevent them from responding for a few days, make sure it gets there on Saturday):

“After careful review of Dr. Bass’s request for authorization, Community Frist Heath Plans is denying authorization for in-office infusion therapy with Tysabri, prescription IV medication, monthly for six (6) months for the following reason(s):

Certificate of Coverage excludes experimental or investigational services or supplies.

You can obtain benefit provision, guideline, medical protocol or criterion on which the denial decision was based from the Member Services Resolution Department. You have the right to file a complaint according to Community First’s internal complaint process. If you choose to file a complaint, please complete the enclosed form and return it to Community First at the address below. A final decision will be made within 30 days from receipt of complaint. Please address your complaint to:

Member Services Resolution Department
Community First Health Plans
4801 NW Loop 410, Suite 1000
San Antonio, TX 78229-9974

If you have any question or need help in completing this form, plesase feel freee to call the Member Services Department at (210) 358-6070, or toll free 1(800) 252-3439.

Sincerely,
CD, MD [name removed by Admin]
Medical Director”


I am going to call people today, drive around town, stop in at the NMSS offices, maybe even drop in on Dr. Bass's infusion center, and try to map out a plan of action.

If nothing seems to be moving along, I believe the State of Texas has a couple of weeks here that we could change our health plan, but we only have two or three to choose among, so that would be my last option to consider. Not very good odds there for an improvement!

So, Good Luck everyone! It seems the HMO is like Humpty Dumpty, able to define words to fit any situation.

Love to all,
Ronnie :evil:
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Re: Ahhh--The Plot Thickens!

Postby HarryZ » Mon Aug 14, 2006 7:20 am

Ronnie,

Certificate of Coverage excludes experimental or investigational services or supplies.



I'm certainly not a lawyer but Tysabri's current status is that of an approved medication for MS by the FDA, albeit with certain strict conditions attached to the approval. My first question to HMO would be to ask why they are considering it "experimental"!

Harry
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Postby amelia » Mon Aug 14, 2006 7:27 am

AMEN Harry!
I think this is a put off for not paying for it. I questioned that right off the bat when I read it.
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Postby amelia » Mon Aug 14, 2006 7:28 am

Ronnie
Was this the same HMO that paid for your other infusions?
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The same HMO?

Postby Ronnie » Mon Aug 14, 2006 8:05 am

Yuppers! Whily little devils, aren't they?

I told my husband, "they probably just checked with their lawyers and decided the thirty days provision would be a way to stall and maybe get rid of some of us pesky varmints."

With this in mind, I am gathering lots of paperwork and getting ready to call or visit everybody I can think of :roll: .

I also have a bone to pick with the pharmacy providing me with single use catheters, who sent me a box with two catheters in it on Friday afternoon. They were supposed to send me two boxes of thirty.

What exactly do these people think we are doing with this stuff, anyway?

Rhetorical question.

Wish me luck!
Ronnie
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