NOTE:
This is written out of concern in one individual. In no way do I mean to impugn other researchers. My concern is for a conflict of interest in one individual with whom I had a personal conversation, which has been documented, and now made public. My specific concern is in how research is being "framed"--how abstracts and titles of papers are being worded in the negative, when the actual research and papers are more positive or inconclusive in nature. My concern is in how other neurologists are using these negative titles and abstracts as "proof" of a lack of association of CCSVI in MS---when the actual research and papers assert that more research needs to be undertaken, and there is a correlation of CCSVI to MS which is not completely illucidated yet.---It is FAR too soon to be saying there is no connection of CCSVI in MS. We are at the beginning. Abstracts and titles of research should reflect this ongoing pursuit. UAB has not "eliminated one cause of MS."
I have not written about this evening, although I have mentioned it to friends and family. I have witnesses who were there, and I wrote down the conversation that night, because it distressed me. This is the truth. I had hoped this would not be an issue, but I now, sadly, believe it is. I feel I have to share it, because I have serious concerns. I had a very disturbing run in with a doctor in Bologna in September 2009. I was at the conference as a patient advocate, the only non-physician, invited by Dr. Zamboni. There was a pre-convening meeting with the lead investigators for CCSVI and neurological guests. Afterward, we gathered for a lovely sit down dinner. I went by myself, since Jeff stayed home in LA to take care of our son.
As I entered the dining area, a congenial man smiled, approached me and introduced himself. We were not wearing name tags, and we introduced each other with first names. He had no idea who I was, and assumed I was a fellow doctor. His name was Gary. I didn't know who he was, but was sure he was a doctor. Our conversation began pleasantly enough...what a lovely location the University of Bologna was, so much history, incredible architecture. And then he said, just out of the blue, "Well, this CCSVI had better not be real, or I'm out of a job!"
We walked into the dining room, and he sat down next to me. Dr. Simka met my gaze across the table, he knew who this doctor was. Gary continued to lead the conversation.
"You know, you have to be wary of these kinds of doctors, he said, gesturing to Dr. Zamboni and Dr. Zivadinov's table..."they aren't scientists, they're zealots." Gary told me he was not a zealot, he was a statistician, he compiled data. He went on, "MS patients are only numbers to me, Joan. I just add up the data." That did it. I couldn't just sit and listen to this blowhard any longer...
I tried not to lose my cool completely, and firmly introduced myself. "I'm Joan Beal, and I brought Dr. Zamboni's research to Stanford University for my husband, Jeff Beal. My incredible, brilliant husband is not a number, he is a living breathing man with MS, and you should know he had two malformed jugular veins which have been treated. And I know people with MS, they are real, they hurt, and they need help. I pray to God no one in your family ever gets ill..that you never have to go through what my family has gone through."
Dr. Simka smiled. He couldn't hear everything across the table, but he could see I had just introduced myself to Dr. Gary Cutter, the statistician from the University of Alabama who has since been compiling and framing the BNAC data. Dr. Cutter looked shocked...he hadn't expected to be chatting up Cheerleader. He went on to back-pedal, to show me family pictures, talk about how much he loved his family, and cared about sick people. But it didn't work, the damage was done. I knew how he felt about this, how he would talk to a colleague about CCSVI. He didn't want this to "be real." He told me he didn't want to lose his job. And I found out why.....
Dr. Gary Cutter received personal compensation from: Alexion, Bayhill, Bayer, Novartis, Consortium of MS Centers (grant), Klein-Buendel Incorporated, Peptimmune, Somnus Pharmaceuticals, Sandoz, Teva pharmaceuticals, UT Southwestern Visioneering Technologies, Inc for consulting, speaking fees & adviosry Boards and for participation in safety monitoring committees from: Sanofi-Aventis, Cleveland Clinic, Daichi-Sankyo, Glaxo Smith Klein Pharmaceuticals, Genmab Biopharmaceuticals, EliLilly, Medivation , Ono Pharmaceuticals, PTC Therapeutics , Teva , Vivus, Univ of Penn, NHLBI, NINDS
Dr. Cutter is on the scientific advisory board for Medicanova, the biotech company that has developed MN-166, a new small molecule treatment for MS. Dr. Cutter is on the board with Dr. Lisak, Dr. Miller and Dr. Barkhof....neurologists who have all written or spoken negatively about CCSVI in MS.
http://www.medicinova.com/html/MS.SAB.html
Here is a 2010 study Dr. Cutter compiled data for--on the safety of Cellcept (an immune ablating drug linked to PML--under an FDA issued warning since 2008)--the whole study was funded by an "unrestricted grant from Aspreva Pharmaceuticals" makers of Cellcept
The study says that Cellcept is a "convenient, oral and now cost-effective immunosuppresant agent"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002613/?tool=pubmed
currently, Dr. Cutter is Director of the UAB site of "CombiRX"
CombiRx is a National Institutes of Health – National Institute for Neurolgical Disorders and Stroke (NIH-NINDS) sponsored multi-centered, double-blind, randomized clinical trial. This trial represents the first federally funded trial to prospectively analyze the long-term progression of relapsing-remitting multiple sclerosis (RR MS) when treated with combined agents and will involve 70+ participating centers and 1000 subjects at sites across the U.S. and Canada. The primary objective of this study is to determine whether combined treatment with interferon beta-1a (INF-b) IM once weekly and glatiramer acetate (GA) SQ daily is more effective than either agent alone in treating RR MS, as determined by reduction in relapse rate.
http://www.soph.uab.edu/rmct/projects/multiplesclerosis
HERE is the article that flipped the switch for me. Dr. Cutter/UAB publicizing the fact that they have "eliminated one cause of MS"
https://www.examiner.com/science-news-in-birmingham/uab-research-eliminates-one-multiple-sclerosis-cause?render=print
Perhaps Dr. Cutter isn't biased...perhaps he was only kidding, and simply picked the absolute worst person in the room to joke with. But I am left with serious questions regarding his work as a CCSVI statistician. Shouldn't these facts be seen as a conflict of interest? I worry about doctors who grow comfortable with the lovely million dollar homes, healthy spouses, children and grandchildren, fabulous lifestyles, world travel--and consider sick people merely numbers. I worry.
Would it be too much to ask to have serious INDEPENDENT studies and data compiled without pharmaceutical financial bias? Is this too much to ask?
This is why I am going on the record---
There, that feels better.
Joan