Living With MS

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

Wednesday, August 30, 2006

TYSABRI EFFORTS REGARDING INFUSIONS:

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/infusion centers 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

1 Comments:

  • At 10:42 PM, Anonymous Roymulus said…

    Lauren,

    I've just sent off the email I promised and I hope that it will provide further encouragement to the recipient to do a great job for all of us.

    I notice on the MSpatientsforchoice.org site that Kaiser in San Rafael is listed as an infusion center. San Rafael is just a bit north of San Francisco. I can't imagine San Francisco and Redwood City will be far behind. Most importantly, we need Kaiser of Laurenville to start infusing ASAP. I am so glad that soon you will be helped.

     

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