Multiple Sclerosis studies, especially about CCSVI, need to be done without ties to Big Pharma

A new article in the Annals of Neurology has made its way across various blogs and discussions about Multiple Sclerosis around the internet. It’s about CCSVI. And when we saw this article’s head line here, “Cerebrospinal Drainage Not Tied to Multiple Sclerosis,” along with the disclaimer:

Several of the researchers on this study disclosed financial relationships with pharmaceutical companies, including Pfizer, Sanofi-Aventis, and Merck-Serono.

Our first reaction was that any study that is to be done (especially one involving a treatment that could potentially make MS drugs a thing of the past)  the authors need to be free of any ties to pharmaceutical companies. The authors are:

  1. Claudio Baracchini MD
  2. Paola Perini MD
  3. Massimiliano Calabrese MD
  4. Francesco Causin MD
  5. Francesca Rinaldi MD
  6. Paolo Gallo MD, PhD

Here are the full conflicts of interest from the article:

C.B. has received compensation for being a board member, expert testimony, payment for development of educational presentations including service on speakers’ bureaus, and has had travel/accommodations expenses covered or reimbursed by Pfizer, Guidotti, Sanofi-Aventis, Novartis.

M.C. has been a member of the board of Merk-Serono, Sanofi-Aventis, and Bayer-Shering; a consultant for Merk-Serono and Sanofi-Aventis; given expert testimony for Biogen-Dompé Italy and Bayer-Shering; received honoraria from Merk-Serono, Sanofi-Aventis, and Bayer-Shering; and had travel/accommodations expenses covered or reimbursed by Biogen-Dompé Italy, Merk-Serono, Sanofi-Aventis, and Bayer-Shering.

P.G. has been a member of the board of Novartis, Biogen-Elan, Merk-Serono, Sanofi-Aventis, and Bayer-Shering; has been a consultant for Biogen-Elan, Sanofi-Aventis, and Bayer-Shering; has given expert testimony for Biogen-Dompé Italy, Sanofi-Aventis, and Merk-Serono; has received honoraria from Novartis Farma, Biogen-Elan, Sanofi-Aventis, Merk-Serono, and Bayer-Shering; and has had travel/accommodations expenses covered or reimbursed by University of Padova, Novartis Farma, Sanofi-Aventis, Biogen-Dompé Italy, Merk-Serono, and Bayer-Shering.

P.P. has received honoraria from Biogen-Dompé Italy, Sanofi-Aventis, and Merk-Serono; and has had travel/accommodations expenses covered or reimbursed by Sanofi-Aventis, Biogen-Dompé Italy, and Merk-Serono.

All of the above pharmaceuticals make Multiple Sclerosis drugs and have a large stake in those drugs. They cost a lot of money. See more about how much money here, here and here. And here as well.

This Foundation is not going to go into the details of the findings of the study. That is best left to experts in this field.

And as we find discussions on this study, we will post them here like the one at the MS blog on About.com. I threw in my two cents as well.

This Foundation just wants to point out the conflicts of interest to demonstrate that studies like these need to be done by those free and clear of the ties as shown above, like being members of the board of Pfizer, Sanofi and Merck. Seriously.

Much more information about CCSVI at The Reformed Multiple Sclerosis Society.

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Analyzing Patient Assistance Programs for Multiple Sclerosis: MS LifeLines and Rebif

As part of our continuing efforts to highlight all the patient assistance programs available through the pharmaceutical companies that make the disease modifying drugs for Multiple Sclerosis, we continue with Rebif.

What we want to know about these programs is:

  1. How easy is it to apply?
  2. What is needed to apply?
  3. How easy is it to receive the assistance?
  4. Do they really work in terms of helping MS patients with financial assistance?
  5. What is offered?

We finally got some good news and welcome answers today when we spoke with MS LifeLines. For those of you with MS who are uninsured or underinsured, you can and do receive help. The application process must begin over the telephone and can, most times, be completed by phone with no waiting period. There is no online application. The phone number for MS LifeLines is 877-447-3243.

You must have a valid prescription for Rebif to start the process. Rebif costs approximately $2800 per month. More drug information can be found at Destination Rx.

MS LifeLines offers three types of assistance, including help for those who are currently taking the medication. The chart below is taken directly from MS LifeLines and explains the assistance for those who are newly prescribed and those who are currently taking Rebif.

How to get started on MS LifeLines Access Made Simple

I asked if MS LifeLines was prepared for the fact that many will be asking for assistance due to the stipulation of going without insurance for 6 months prior to applying to the new high risk pools and indeed, could they be receive Rebif at no charge? The answer was yes, and yes, they already do offer assistance of free medication, up to one year, for those without insurance. MS LifeLines also stressed to me the importance, they feel, of making sure those who do need Rebif and cannot afford it, do get help, including the Medicare Part D “Donut Hole.”

Rebif is made by EMD Serono, Inc., an affiliate of Merck KGaA, and by Pfizer Inc. Stock quote for Merck here. Quote for Pfizer here.