Living With MS

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

Tuesday, March 06, 2007

My Tysabri Diary...

As this week (March 5-12) is MS Awareness Week, I thought it was appropriate for all of you MS patients, and specifically Tysabri patients, to be aware of the falsehoods re: Tysabri are still being pumped by either Tysabri's competitors, ignorant reporters, or journalists who hook their readers with sensationalistic falshhoods rather than the truth.

This is what I just posted on a MS board in an effort to try and stop promoting these falsehoods (as this person posted this article on two separate forums of that board-ugh!)...won't you Tysabri users join me in writing Mr. Fauber?:

"I too posted the following in the News section as well:

Hello squeaky...

As this is MS Awareness Week, here was my reply to Mr. John Fauber, who wrote that article that was slanted, biased, and filled with falsehoods and misinformation, including the cost of Tysabri. I advised his editor of same as well, by submitting an op-ed is articles like his that are used to scare patients needlessly.

I would suggest all of us on Tysabri write him and speak their mind...I can't even count the number of emails I received from scared MS patients that I had to calm down and reassure due to OUTRAGEOUS articles like his that promote these misconceptions...UGH! All of us need to be Aware of cr*p like his article:

Mr. Farber,

I have reviewed your article "milwalkee journal sentinel, Multiple sclerosis drug brings lethal risks, but great promise for some" dated 3/7/07 .

As a MS sufferer for 31 years, I am quite dismayed at the false and misleading information that you have reported re: Tysabri, and which has now done a terrible disservice to the MS Community - specifically MS patients looking for accurate information on Tysabri. Further, I have had 5 Tysabri infusions since 10/06, plus one infusion in early 2005, prior to it's voluntary removal from the market so that additional safety reviews and data could be studied, collected, and submitted to the FDA for final analysis.

Please allow me to comment on a numerous falsehoods that were reported (I am also writing to your editor with a request for a published apology and correction to your readers):

1. "a precious but potentially lethal fluid into his vein." Tysabri is not and has never been lethal, nor has it ever been attributed to the death of a confirmed MS patient with a non-compromised immune system when administered as a monotherapy. Approximately 3ooo trial patients and approximately 5000 patients in the general population from 11/04 - 2/05 that met the critera above (myself included), for a total of 8,000 patients, none of us developed PML and died. That's a risk factor of zero in 8,000 or 0:8000.

Progressive Multifocal Leukoencephalopy (PML) has been attributed to dimished immunosurveillance and NOT Tysabri. See NEJM -- Medline Abstract re: PML"... the emergence of PML has been attributed to diminished immunosurveillance."

2. "As the drug, which costs several thousand dollars a month".. Tysabri does not cost several thousand dollars a month. Tysabri costs $2,184.62 per vial, and as an outpatient procedure/infusion, it is covered by Medicare/Medicaid and most insurance policies. Elan: TYSABRI® Pricing and Financial Assistance.

3. "The drug was taken off the market in 2005 after three people out of about 2,900 who had been in clinical trials developed brain infections."...out of those 3 patients - 2* of them received Tysabri in combination with Avonex-an immunomodulator, and the third patient was a Crohn's patient with an existing severely compromised immune system due to being on Azathropine/Imuran for 6 years. *The "MS" patient that had the combination therapy with Avonex and died, upon autopsy revealed that she did not have histopathegic MS. And neither did the Crohn's patient that died. Therefore, your statement
"Two of them died" needs to be quantified as the 2 patients that died did NOT have MS.

4. "There is no treatment for the infection, known as progressive multifocal leukoencephalopathy, or PML. And there is no way of knowing who will get it" - 75% to 80% of the general population (MS or not) carry the JC Virus which lies dormant in the kidneys. Experts believe that when the immune system is severely compromised, the JC Virus is released into the blood stream and develops into PML - and the CNF can confirm same if symptoms of PML develop, as well as diffused lesions on MRI. Therefore, a patient can't "get" PML like a cold, and Tysabri's strict TOUCH protocol is in place to minimize the risk of developing PML, and which can also identify those higher-risk patients..

5. "There is some indication that it may be twice as effective as other MS drugs and that it can reduce the number of relapses by two-thirds". There is proven data of these facts - see two separate findings: (1) TYSABRI® Two-Year Phase III Multiple Sclerosis Clinical Trial Results and Safety Evaluation Published in New England Journal of Medicine; (2) New Pharmacoeconomic Data on TYSABRI® Demonstrate Significant Reduction in Steroid Use and Hospitalizations in Patients with Multiple Sclerosis

6. "Beyond the grim calculus of risk and reward". When the patient and their neurologist weigh the accurate and low risk vs. the superior efficacy of 68% and Tysabri's proven spectacular rewards, I
would hardly categorize that as 'a grim calculus'. Further, see the Utah story of the gentleman previously in a w/c, and now is walking again with Tysabri: - One Utahn with M.S. Experiencing a Miraculous Recovery [Darren posts on my Blog]

7. Your quote from a neurologist: ""You need to be very selective about who you treat."". From the Tysabri Label: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations." With over 400,000 MS patients in the U.S. alone that have a 'relapsing' form of MS (50% +), and with Tysabri's FDA approved use as a 1st line and/or 2nd line therapy, I would hardly call that 'very selective' either.

8. "For instance, a claim receipt from one Tysabri patient shows St. Luke'sbilled Humana Insurance $9,991, minus $3,996 for a plan discount,resulting in a net payment of $5,995. St. Luke's declined to comment onpricing.".
Such price gouging is coming from the infusion centers - not from the drug price. Such unethical business practices should be immediately reported to the appropriate authorities of each state where this is taking place .

What a sad day it was when I read your article which is filled with so many false, misleading and biased statements (too many to address in one email). It was (I believe) designed to scare patients away from the most effective MS therapy available to them in over a decade, which could prevent them from suffering needless disabling relapses, further disease progression, or having to endure the horrific side effects and injection site reactions of the lesser effective older generation drugs. At least it certainly appeared that way from statements I'm hearing and seeing made from many others (with and without MS) .

If you want to research accurate facts re: Tysabri, go to which has Tysabri Patient Progress Reports, Tysabri videotapes, and much, much more.

Mr. Fauber, you now have the perfect opportunity to right this egregious wrong, and show your readers what a truly outstanding journalist and paper can do for their community and more importantly, for those who are suffering worldwide from the debilitating effects of Multiple Sclerosis.

Thank you for time and for your attention to the above.

Respectfully submitted,
Lauren Roberts
A very
proud member of: "

I'm exhausted, and it's dinnertime here.....until next time -

(((hugs))) Love, Lauren


  • At 9:17 PM, Blogger Gretchen Steele said…

    Holy Moly - I see I have some typing to do. Evidently my infusion center is gouging - they charge me 4470.00 per dose ...hmmm..... and remember that Medicare only pays for 80% of the charges for outpatient treatments - they do not have to accept assignment - so that means I end up paying 20 of the charges - not the allowable charge as in is typical in Part B charges for MD visits .....
    Glad you brought this to our attention. Wonder just how many potential Tysabri patients were scared off by that rubbish?

  • At 3:34 AM, Anonymous Anonymous said…

    Lauern: So well stated, as always. The challenge to Mr. Fauber is out there to right the wrong reporting. I hope he can do so for all the readers. The information you provided the public helps us all to be more aware of the facts. Thank you for taking your responsibilities so seriously.


  • At 9:25 PM, Anonymous Anonymous said…

    legally, as i am given to understand it through my large pharmacuetical company employer, pharmacies may charge 6% over the cost of the medication. the cost for the infusion itself is up to the site of care.
    if you want tysabri and have financial challenges paying for it, call the manufacturer. trust me on this. dozens of times a day i say 'we can investigate your insurance coverage and if you need financial assistance beyond your coverage we can help you look into those options. this is a free service'
    i get paid to help MS patients find ways to get tysabri without having to mortgage their lives and souls for it.
    if your infusion site is charging you more than around $2300.00 for just the drug, you should investigate that.

  • At 4:36 AM, Anonymous Anonymous said…

    Our local/regional daily newspaper carried this article in the Sunday, Marc 11 edition. Using Lauren's well written rebuttal as a guide I quickly crafted a letter to the editor regarding the misleading information in the article. I am currently awaiting a response from the editor.

  • At 7:32 AM, Anonymous The Patient Connection said…

    The Patient Connection would like to take this opportunity to invite you to participate in a new blog on Multiple Sclerosis. It would be great if you could do so as it will help us plan research into Multiple Sclerosis over the next few months.

    What it is:

    The purpose of this blog is to help The Patient Connection find out more about living with Multiple Sclerosis and how it is treated, its effect on home and the environment.

    Also, you may be aware that in the United Kingdom NICE, the Government's drug watchdog, has recommended against the prescription of one of the most effective drugs so far developed to treat Multiple Sclerosis. NICE has advised that the efficacy of Tysabri is not proven or that the cost is simply too high.
    "In clinical trials, Tysabri has shown a significant reduction in relapse rates and a reduction in the risk of disability progression.”
    What does this mean? People with MS could face the prospect of an improved quality of life, would have the chance of staying in work and be independent and not rely on State benefits –
    Simon Gillespie said: "The UK is now alone in rejecting this drug. More than 10,000 people with MS in Ireland, Germany, the USA and elsewhere are already benefiting. But NICE has decided people with aggressive MS in the UK are simply not worth it."
    What are your thoughts? How are you currently treated? Are you fortunate enough to have been prescribed this drug? Do you have to go abroad for your prescription and treatment? How are you currently treated? Have you changed your lifestyle? Do you get the right support from the State, employers, friends, family?

    If you wish to participate in market research now or in the future you can join our research community The Patients’ Voice here

    If you have any more questions please feel free to get in touch with me on

    Thanks for your help

    The Patient Connection


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