This Is MS Multiple Sclerosis Knowledge & Support Community

I know this has been going on with other posts in this forum. Just thought I would start a new thread so others may see. If you haven't been keeping up on the "Extremely Restless" thread, you are unaware that there are problems to actually getting your Tysabri appointments set up.
Here is Gary's latest update:
Nurse of Neuro called this morning. They are setting up MRI's of the brain for everyone trying for the Tysabri. Must be a "TOUCH" thing to do. You have to have had an MRI of the brain in the last 6 months. With and without enhancement. Next step is to fill out paper work. I'm sure there is plenty of that. Then all of that is forwarded, to Biogen or TOUCH headquarters, I assume. Then he is approved / disapproved and set up for first infusion. We have Medicare only as insurance. Nurse asked this and said, okay, like no big deal. Gary's DR is in Memphis, TN. She is NOT certified, YET, but will send him to her friend DR that is certified in town, if he wants to go ahead and get started, while she waits for her certification to go through. That is where we stand. We are waiting on the MRI to be set up, as I write this, Monday Morning.

Dear Amelia and Gary, Lauren, Harry, and all:
Well, if they want the brain scans to have been done within the last six months, Community First HMO had better hurry up, because I had my MRI on March 6th at 9:45 at 540 Madison Oak suite 160. My neurologist sent me in when we first anticipated Tysabri coming back on the market!

I am still waiting to hear back from the HMO. One of the reps has surmised that this is a clerical oversight, and that the status of Tysabri isn't reflected in their database, perhaps because it hasn't been changed since the FDA reapproved the medication. Meanwhile, they have sent me notice that my appeal is being reviewed by a health care provider not involved in the determination which led to the denial. Nice of them.

Good luck, everyone!
Ronnie

Well, Ronnie,
We are still waiting to hear when Gary's MRI is scheduled. I'd hate to know that I'd have to rely on these people to save my life in a hurry!

FINALLY, Gary's nurse called today and I was out, of course. She was looking for his Medicare number and he is blind, so it has to be me to give out everything. I called and left message with her about his number. Either I am too DANG impatient! or they are really SLOW about everything. Probably both.

Dear Amelia:
This is my opinion, mind you, but I think there must be a course of study in Stalling the Patient, which is required in some curriculae (like when I studied at University of Illinois, you were required to take a course which was an overview of all of the majors in the Arts if you were a frosh art major, which had zero credit hours but was a prerequisite for any second semester art class).

I am considering putting together a piece called Shell Game, about getting the HMO to give me my medication.
Love,
Ronnie

Dear Amelia:
This is my opinion, mind you, but I think there must be a course of study in Stalling the Patient, which is required in some curriculae (like when I studied at University of Illinois, you were required to take a course which was an overview of all of the majors in the Arts if you were a frosh art major, which had zero credit hours but was a prerequisite for any second semester art class).

I am considering putting together a piece called Shell Game, about getting the HMO to give me my medication.
Love,
Ronnie

ps. I already posted this, but received an error message, so I am posting it again (I am not sure what is happening).

What I find INCREDIBLE is
Tysabri approved by FDA in June 06
But not commercially available until July 06
BUT nobody is certified to give it, which is the ULTIMATE requirement to give it until Aug 06
August 06 is quickly coming to an end and Gary has yet to get his appointment to ACTUALLY RECEIVE it
Sept 06? Oct 06? or maybe another YEAR of jump through this hoop, then turn around 5 times, sing a song, etc.......................

IF this stalling is mainly due to the CRABs marketing, well. I can't type what I want from that.

read my post on the 'Extremely Restless' thread, major headway with Kaiser..woohoo!

also, A NATIONWIDE LIST OF TOUCH CERTIFIED INFUSION CENTERS IS AVAILABLE!!! See Thread here or see my Blog - http://lauren-livingwithms-aolcomlglbgl ... gspot.com/ for further info.......yeeeeeehaaaaaaaaaw!

Dear Lauren, and everyone else:
OK, I got a promise from someone at the HMO yesterday morning that the approval for an authorization for in-office infusion of Tysabri would be possible by that afternoon or today, once the Medical Director had reviewed the files.

Then, yesterday at 4:40 pm, I got a call from a nurse who told me she needed the doctor to fax over the documentation for the TOUCH program from the infusion center, the physician herself, and for me (patient).

The doctor's office had closed at 4:30 pm.

This morning, at 8:30 am I called the doctor's office. I spoke with two different nurses, and finally one of the nurses (Angel, now I owe HER cookies as well) told me "You shouldn't have to do any of this. They should do all of this. The patient shouldn't be involved in all of this." she further stated that although the infusion center and the doctor are registered and certified with the TOUCH program, none of the patients can get TOUCH certification until the insurance companies are finished negotiating the price, "and she should know that already!"

So, I am frustrated and annoyed. Meanwhile, one of my friends in town is receiving her infusions through a different infusion center with a different doctor, with different insurance coverage.

We should have switched to Blue Cross, right?
Gee whiz.
Ronnie

I passed frustration a loooooong time ago! Re: BC/BS, you must check with them first to see if Tysabri is covered because their policy differs from state to state. . . grrrrrrrrrrrrr!

Meanwhile, one of my friends in town is receiving her infusions through a different infusion center with a different doctor, with different insurance coverage.

Ronnie, could you please advise her of the following info as MSPatientsForChoice is compiling data on Tysabri infusions....,

Now to all reading this thread, it is important to note ALL of the following re: Tysabri infusions...(some may have seen sections of the info before), but the following is complete and uptodate info, therefore, read to the end please, best wishes to all! Lauren:

OUR WEBSITE NOW HAS A LIST OF TYSABRI CERTIFIED INFUSION CENTERS, NATIONWIDE!

MSPatientsForChoice.Org Now Has Nationwide Tysabri Infusion Sites Listed
There are still a few bugs to work out, but the website www.MSPatientsForChoice.org now has updated information, including these really useful Google maps for all of the US ZIP Code ranges so folks can easily search for the closest TOUCH-enrolled Tysabri infusion sites. We are hoping to get a list of TOUCH-enrolled neurologists before long, but as since, there is a substantial overlap, as the larger MS practices have in-clinic or in-hospital infusion clinics.

These are regular Google maps, so if you know how to navigate those, you will do fine. You can drag the map with your mouse, or use the scale in the upper left (or the wheel on so-equipped mice) to zoom in or zoom out. You can zoom in all the way to see the precise location of a particular clinic, and use the "Hybrid" button in the upper right to see an aerial photo combined with a street map.

There is also a list of infusion sites on the left side, so you can click on any of those to see the precise location. Here is link to the page with the infusion site maps:http://www.mspatientsforchoice.org/in.htm

Tysabri Efforts:

As many of you know, I am a big supporter of Tysabri (although I will support anyone's choice of MS therapy). The website I belong to: http://www.mspatientsforchoice.org/ is compiling data on Tysabri infusions, which will be posted on our website and updated regularly to assist other MS patients looking for this information, as well as assisting us in putting together a better overall picture of how well Tysabri is being introduced and its benefits/risks. We will also have a list of "TOUCH" certified neuros, in the near future, located nationwide to make access easier for patients.

Please review the below information and if you feel more comfortable sending your information to me (as you know me) at LGLBGL2003@AOL.COM , I can edit out any "personal" information received before I forward same to our patient advocate, David Kaplan (a WONDERFUL man who helped organize MSpatientsForChoice, and met with FDA officials to argue for having MS patients testify at the March 7, 2006 FDA Advisory Committee hearings re: Tysabri). You may copy the information below with your responses into an email, or attach it to an email, and send same to either myself, our website or David Kaplan directly...thank you all SO much, Lauren :

From David Kaplan:

Thank you for contacting www.MSPatientsForChoice.org about your progress toward getting Tysabri or in using Tysabri. I am the Washington, DC coordinator for this nonprofit, all volunteer website, which was started by MS patients in early 2005 to help spread the truth about Tysabri, and organize to inform the FDA, the media and the public about the patients’ perspective.

We are compiling information on the progress of MS patients in getting enrolled in the TOUCH program, getting insurance reimbursement resolved and getting their first Tysabri infusion. We will also be monitoring how patients do on Tysabri, collecting information on benefits and any issues that might arise. All personal identifying information will be kept confidential, with only non-identifying information compiled and disclosed to get an overall better picture.

We are interested in the following type of information, and anything else you care to share. If you can get other Tysabri patients to share this information, that would be very helpful, as the more information we can collect and share with everyone, the sooner we can get the story out, and notice any patterns:

. How long did it take to get enrolled in the TOUCH program, once you started the process?

. How long did it take to get insurance reimbursement resolved?

. What was the date (or the scheduled future date) of your first Tysabri infusion?

. Did you find your Biogen case manager to be helpful, or did you have to really push to get TOUCH-enrolled and insurance reimbursement?

. We are collecting information from each vial of Tysabri used, so we can better track Tysabri usage. We would like to get the Lot Number and the Expiration Date. You have the right to get this information, but you will have to ask for it.

. What (approximately) is your total co-payment for each infusion?

. Will your infusions be taking place at your neurologist’s office, or at a separate infusion center?

. How far (approximately) do you have to travel from your home to where you get your infusions?

. After your first infusion, did you notice any change in your condition? At what point, and exactly what did you notice?

. As you proceed through subsequent infusions, we would like to track your progress. For example, before your first infusion, what was your general level of disability, in terms of everyday functioning? At what point did you notice any changes, and what were those changes? Did you have any sort of adverse reaction to the first or any subsequent infusions (which ones, and exactly what)?

. What is the general attitude at your neurologist’s office about Tysabri? Were you encouraged to try it, did you have to push to convince your doctor to evaluate you for Tysabri, or was it something in the middle (provide as much detail as possible, please).

. What are you hearing about Tysabri from other MS patients you know or meet at the doctor’s office?

. What, if any, MS drug(s) were you on prior starting Tysabri? What were your experiences with those drugs? How long a "wash out" period did you have before starting Tysabri?

. Did you use Tysabri when it was briefly on the market in December 2004 through February 2005? If so, how many infusions did you receive? Did you notice any benefit? Exactly what?

If you have other questions you suggest we ask Tysabri patients, please let me know. Again, all personal information will be deleted when this information is compiled.

Please let me know if you have any questions.

Regards,
David E. Kaplan
Web: www.MSPatientsForChoice.Org
Email: davidksra@comcast.net
David E. Kaplan
2831 29th Street
NWWashington, DC 20008
Tel 202.483.7913
Cell 202.625.0030
Fax 202.332.4877

Financial Assistance for MS Patients

Assistance to MS Patients with Unduly Burdensome Insurance Co-Payments

Some insurers are requiring co-payments of as much as ten percent (10%) of the total cost of Tysabri and the infusion, approximately $300 or so per infusion (about $4,000 annually for the typical 13 infusions). Most co-payments are lower. We are working with Biogen in an effort to reduce these co-payments as much as possible, and programs have been set up to assist MS patients who are unable to afford large co-payments. Our initial goal is that the Tysabri co-payments should be no higher, as a percentage of the total cost, than for the CRABs.

If you find your co-payment unduly burdensome after you have been enrolled in the TOUCH program and have been approved for insurance reimbursement, ask your case manager at MS ActiveSource (1-800-456-2255) to direct you to the various assistance programs that have been set up.

If you have problems, contact www.MSPatientsForChoice.Org at admin@mspatientsforchoice.org and we will do what we can to provide assistance. We are continuing to consider converting MS Patients For Choice to a 501(c)(3) nonprofit organization (so that donations are tax deductible to the extent allowed under IRS laws and regulations -- consult your tax advisor), and then do some fund raising to assist MS patients with their co-payments.

Here is some information for MS patients on getting financial assistance with the expense of Tysabri, and for those who want to make a tax deductible donation to assist MS patients.

For MS patients, you must first qualify for Tysabri and get enrolled in the TOUCH program through a TOUCH-enrolled neurologist. If you do not have a TOUCH-enrolled neurologist, within the next few weeks Biogen's MS ActiveSource program (1-800-456-2255) will be set up to give you several nearby TOUCH-enrolled neurologists organized by ZIP Code. Once you have been examined by a TOUCH-enrolled neurologist, obtained your required baseline MRI and have been enrolled in the TOUCH program, you will be assigned a Case Manager by Biogen through their MS ActiveSource program. The Case Manager will assist you and your neurologist with insurance reimbursement issues, including insurance co-payment assistance or with getting free Tysabri if you do not have insurance.

Co-payment Assistance:

While MS Patients For Choice is getting itself organized as a 501(c)(3), there is an existing organization that can assist MS patients who need assistance with Tysabri co-payments, the National Organization for Rare Diseases.

Here is the contact information:

NORD MS Premium /Co-Payment Assistance Program
Conditions:
Multiple Sclerosis
Contact:
1-800-634-7207

NORD MS Medicare Co-Payment Assistance Program
Conditions:
Multiple Sclerosis (MS)
Contact:
1-866-924-0100

Free Tysabri for the Uninsured and Under Insured:

Biogen may be agreeable to making free Tysabri available to those patients who are uninsured and under insured. Work with your Case Manager at MS ActiveSource to pursue this route.

How Others Can Help:

NORD is in discussions with Biogen about setting up a fund specifically for Tysabri co-payments for privately insured patients. However, it is against the law for such a fund to be set up specifically earmarked for Tysabri for Medicare and Medicaid patients, and most drug companies are reluctant to contribute to a general fund for MS patients as those funds can be used for the competitors' drugs (who may not be making similar contributions). However, individuals can make contributions that are earmarked for co-payment assistance for a specific drug, so here is a link to the NORD website to make such a tax deductible contribution:

http://www.rarediseases.org/helping/donate