The tension is mounting between research, medicine and patient communities whose lives are affected by multiple sclerosis (MS).
Fuelled by media coverage of individual success stories of a still-unproven treatment and testimonials on social networking sites on the Internet, the methodological pace of science necessary to ensure safe and effective cures is being challenged by the need for speed for the 55,000 to 75,000 Canadians who suffer from this devastating disease.
The need is real, but the proof is still lacking.
The problem has become acute in the face of a recent pilot study carried out by Dr. Paolo Zamboni and his team in Italy.
Zamboni, a former vascular surgeon, examined the necks of MS patients and discovered that nearly all of them presented with a malformation of the veins responsible for the drainage of the brain. He hypothesized that this draining malfunction and its consequences (e. g., blood moving into the brain instead of out of the brain and creating pressure, iron deposits) might explain several MS symptoms.
Zamboni called this blood drainage disorder chronic cerebrospinal venous insufficiency (CCSVI) and began attempts at restoring normal blood flow in these patients.
In December of 2009, Zamboni published the results of his pilot study on 65 patients in the Journal of Vascular Surgery. The results were encouraging and positive, suggesting a significant improvement in the condition of a majority of patients. The surgical procedure to restore blood flow was dubbed “The Liberation Treatment” and the news was quickly picked up by the media, which heralded this treatment as a new cure for MS.
Many of the most vulnerable people in our country are pursuing this procedure at personal cost.
Some impatient health care providers are already marketing it directly to consumers and accepting payment for what they already call health care delivery, while it may be more akin to health care experiment.
More cautious patients are offering to pay large sums to enrol in clinical research trials, suggesting enormous goodwill but growing desperation.
The tail is wagging the dog. Missteps will only impede much needed progress for overcoming MS in the long run.
While people should not be stigmatized for asserting their right to pursue hope, given the current and preliminary state of knowledge, one must carefully weigh the harms and the benefits.
While slow scientific progress is not acceptable, reckless and entrepreneurial medicine is worse.
Working at cross-purposes is not the answer: MS researchers, health care providers and journalists urgently need a new paradigm in which to accelerate the development and proper testing of therapies and work together to convert hope into a cure for MS.
Editorial written by Core members Julie Robillard and Judy Illes for the Vancouver Sun.
Read more: Article from the NY Times