Living With MS

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

Saturday, September 02, 2006

Financial Assistance For Tysabri Infusions

MS ActiveSource and MS Patients For Choice

In the next week or so, people can call MS ActiveSource at 1-800-456-2255, give them a ZIP Code, and they will be able to provide contact information for a couple of nearby TOUCH-enrolled neurologists and infusion centers. I was was advised that because everything takes place in a very controlled environment for Tysabri, IT programs need to be written and checked, SOPs need to be developed and implemented, and training needs to take place. This takes some time. However, please rest assured the team is working on it actively to assure that this service is available to patients interested in locating a physician.

At present, does have a process to help identify infusion sites for patients who have been enrolled. The TOUCH enrollment process is proceeding, with approximately 20 sites being enrolled every business day, and there are Google links that will show the precise location of each infusion site for every part of the United States. Thank you to all who are assisting with this effort.

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. The website is 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. Their 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 and they will do what they can to provide assistance. They 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.

In the interim, 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 SclerosisContact:1-800-634-7207 NORD MS

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

When in doubt, work with your Case Manager at MS ActiveSource to pursue this route.

How Others Can Help:

NORD seeks to establish funds for specific drug 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:

Best wishes always,


  • At 5:17 PM, Anonymous Anonymous said…

    Today I finally got approved for Tysabri! At last! My first infusion is scheduled for 9/16! Thats the good news. The bad news is my co-pay for Tysabri is going to be $90 every 28 days and then an additional $20 co-pay at my infusion center. I'm quite sure I don't meet the requirements for financial aid so I guess that means I will have to give up something else.

  • At 9:48 PM, Anonymous zeb said…

    I am anxiously waiting for my phone call to schedule Tysabri.
    I have not been able to tolerate the other "therapies" A,B and C. I have only been dx'd 3 and a half yrs but know I have had ms symptoms for as long as I can remember. Trust me, that is a long time.

    I am now 50yo and today I bought my first cane.
    I have trbl w/ my 'good leg'. No strength to stand or walk. I also am having trbl w/ the meds wking for me.Ritalin for energy and focus (I was also dx'd w/ADD) and Ativan for sleep. They both have quit on me.
    I am now trying Provigil for the second time. I cannot remember why I stopped it but, I did, for some good reason a few years ago.
    I took my first Provigil today and screwed up. I took it at 3pm only because that was my first chance to get to the drug store to fill the script. Now I took Ativan and Flexeril to try to relax and sleep, somehow.
    These meds are all dr approved and I often wonder if there is any way out of this pill taking. I know, I know, they are supposed to help. But I don't trust dr's since I had seen so many prior to my dx for Migraines. I had many MRI's and the radiologist read the films and then reptd to the dr= "possible ms or vasculitis" Well that info never made it to me in those early years. Back to 1983.
    I saw the reports recently-last year-that would have given me some idea of what my options were. All I ever got was physical therapy and anti-depressants and pain meds. Anything I wanted to try was available. I tried them all and now have an allergic reaction to pain meds codeine based.
    I still get migraines and will wonder what connection they may have to my ms. I would be interested to know if others w/ ms have had the migraines prior to dx.
    All I can take now is Relpax -if I get to it in time..or I need to give myself a shot of Toradol. an anti imflammatory strong enough to make a stomach sore for a while. But it's a trade off.
    I hope that this Tysabri will be what I have needed. I feel like I am in a 'make or break' situation. I will need to go on SoluMedrol next week unless some fine miracle occurs and I get my own way of walking back again. Instead of falling into walls and really looking like a drunk.
    Speaking of that, I have one of those too. My husband.
    His disease has a hopeful chance of becoming controllable.
    Meanwhile I will go to a Alanon grp for my support- and hope I can pull through and ignore the daily stress of trying my best to be an active mom for an active 9 year old.
    My faith keeps me sane.

  • At 3:16 PM, Anonymous Anonymous said…

    I was on a study and now soon to be off and want to continue on Tysabri; however my copay will be $500 which is out of the question. I called NORD and they are not accepting new applications for financial assistance for 6-8 weeks. I was not tolerating Betaseron very well but it looks like I will have to sadly go back on it. I was doing better with the Tysabri. Even though I work and have insurance I cannot afford Tysabri which is sad, because I do not make alot of money.

  • At 5:58 AM, Blogger Kendell said…

    I was in similar position when I started Tysabri-tried everything else, had chemo twice(Cytoxin), numerous steroid treatments, building up tolerances...I started Tysabri 3 years ago. I also started exercising regularly, watching my diet, and taking Vitamin D and calcium supplements. I feel almost 'good'! I weaned myself off pain meds and my zanaflex(spacticity). I had an appt with neurologist last week, he was impressed-been seeing him since 1985. I do believe in the power of positive thinking. Tysabri seems to be working for me thank goodness. I don't know if I'll ever be able to get off all the meds but I do like how much healthier I feel and that I can enjoy my first grandaughter. Good luck to you, I hope it works as well for you.

  • At 11:34 AM, Blogger Kendell said…

    Ok when I said I started taking vitamin D I meant large doses. I take 2000 IU 3x per day. I just wanted to clarify because I was taking calcium with 400 iu; but my neurologist suggested that I up my dosage. Didn't think it came stronger than 400; but yeah, up to 5000 iu. Don't succumb to the negative thoughts/doubt. Stay strong and good luck.

  • At 11:11 AM, Blogger Lauren said…

    Thank you so much for all your comments..., good luck to all of us who are on Tysabri.

    All my best to everyone, Lauren :)

  • At 7:59 PM, Anonymous Juel in SC said…

    Hello everyone. I was diagnosed in 2005 with relapse/remitting MS. In the early years, I tried Avonex for about 3 years (really big needle). I had the flu symptoms after every shot that lasted 24 hours like clock work! Then in 2008 I moved to Rebif. Same symptoms, smaller needle, plus the itchy red bump at the injection site was horrible and lasted longer than 24 hours. Finally, started Tysabri in 2009 and this infusion gave me my life back. I still take pain meds and muscle relaxers for back pain. but my legs and my feet feel normal. :) I hope that this link helps anybody in need of co-pay or full pay assistance: they help me and I pay no addittion cost. Good luck folks.
    Juel in SC


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