One might think that with something as large and important as Multiple Sclerosis, there would be a uniformity of purpose among all the parties concerned. After all, shouldn’t everyone agree that finding a safe, effective, low-cost treatment is all that counts? And there should be no room for hidden agendas or individual self-interest and financial gain? One might think so, but that’s not the case.

Here are the key players in this huge industry:

• Prominent neurologists who specialize in MS patients. Most of the vocal CCSVI critics have a lifetime invested in a field that could soon become marginalized. If that happens – and it looks increasingly likely – then treatment will be moving from one specialty (neurology) to another (radiology and vascular surgery). Deep down, neurologists’ anger is based on fear.
• Drug companies. There are six MS drugs on the market today, with many more in the pipeline. Worldwide revenue from MS drugs in 2008 was $8.8 billion, and should double by 2014. Current drugs may create serious immediate and/or future side effects, yet provide limited effectiveness for most patients. Drugs absorb 49% of the money spent on MS, but what will happen to the drug industry if the focus turns increasingly to the vascular?
• The decision-makers. Politicians, professional bodies and their bureaucratic appointees make the regulations and laws governing MS. This is where real power lies. Trouble is, they’re listening to the wrong people. Neurologists, drug companies and the National MS Societies have a very biased agenda and do NOT represent patients’ best interest. We aim to correct this imbalance.
• The National MS Societies. A huge, expensive, self-perpetuating bureaucratic organization that exists because … it exists. They take in over $800 million a year but what do they actually accomplish? How do they justify their colossal overheads? And why do they hate CCSVI? (We can certainly guess!) The Reformed MS Society will seek to offer MS patients a more effective representation.
• MS patients and their families. We support the $15 billion-a-year MS industry but we are at the bottom of the food chain. We have no dedicated representation, we lack an effective voice, and we are powerless to assess risk and to choose our own treatment. We are continually being frightened, and have been living without any real hope until we learned about Dr. Zamboni and his discovery of CCSVI.