Copy of congressional letter - Google Docs
Dear Congressperson,
There is an innovative new approach to understanding and treating Multiple Sclerosis (MS), that has already benefited thousands of patients worldwide. Sadly, this new approach has been met with resistance by a medical establishment that seems wedded to more traditional ideas about the disease. These ideas have fallen grievously short of achieving the outcomes that all MS patients and the people who love them hope for, relief from the crippling symptoms and the discovery of a cure.
MS is an awful disease that afflicts over 400,000 Americans. MS can be mild and transient or leave its victims in a state of total paralysis. In terms of both economic and human capital, MS costs this country dearly, as it attacks most of its victims in the prime of their lives. MS destroys careers and relationships just as surely as it destroys the human body. The care of any individual MS patient can run upwards of $100,000 per year. It is traditionally viewed as an autoimmune disease where, for reasons that remain mysterious to science, the body's immune system turns on its own vital nerve cells. This perspective on MS has persisted for decades, despite the fact that extensive research has failed repeatedly to prove its suppositions. The immuno-modulating drugs it has fostered have helped a few, but with extremely high cost, low rates of success and devastating side effects.
Within the last several years, the notion that MS may not be a purely neurologic disease, but rather one with an important vascular component, has begun to take hold in certain corners of the medical community. In 2009, a clinical syndrome called CCSVI (Chronic Cerebrospinal Venous Insufficiency) was reported by a vascular surgeon to be found in most people with MS. The basic hypothesis that vascular abnormalities are linked with MS is neither new nor radical , but it has been largely ignored since the 1950’s. Some cutting edge vascular doctors have started treating MS patients’ veins with a form of minimally invasive angioplasty (much like the techniques used to treat patients with heart disease) with some success; their efforts at times have resulted in dramatic symptom improvements & restored lives.
Although the worldwide patient community has enthusiastically backed this new treatment modality, mainstream MS specialists (neuroimmunologists) have in large part rejected it, even objecting to basic research designed to prove or disprove the validity of the CCSVI hypothesis. This is despite the fact that published studies in the vascular medicine (phlebology) literature have shown the idea to have merit. Often front-page news in the foreign press, the US media has largely ignored what may be one of the most important medical breakthroughs of this generation.
The National MS Society granted $2.4M to basic CCSVI research, with promising preliminary reports leading the Canadian government to begin funding CCSVI research. Saskatchewan is starting a clinical treatment trial in New York this year. However, turf wars are getting in the way of finding solutions quickly, and are wasting limited resources as well as precious time. While we understand that research takes time, the huge promise of CCSVI demands a more generous, expeditious and robust response supported by FDA and funded by either through NIH ,or a public-private partnership. This is not a request for more money. This is a request for a more multi-disciplinary approach to publicly supported MS research.
Certainly, the United States of America, admired around the world for its tradition of innovation and leadership in the field of medical research, should not and cannot allow entrenched but ineffective medical doctrine to stand in the way of advancements that could ease the anguish of so many of its citizens. For our sake and for generations of Americans to come, I plead with you to use your position of power and influence to urge a more energetic-multi-disciplinary approach to researching CCSVI and it’s role in MS and other neurovascular diseases.
MS patients often say that "time equals brain". MSers quite literally do not have time to wait as the damage is done. Any help you can provide in this matter would be appreciated beyond words, by MS patients and by the people who love them. I would welcome an opportunity to work together with you to accelerate the cooperation that we so dearly need.
Sincerely,
Patient, husband,wife,son,daughter,mother, father,cousin, friend