Last week’s shut-down of the Albany, NY clinical trial investigating CCSVI treatment due to lack of patient enrollment is a big set-back on a number of fronts. It’s bad news for the Saskatchewan government, which allocated $2.2 million and recruited patients to travel to the U.S.—and a blow for those who’d taken part in the trial or were lined up to go. But, like all failures, it’s instructive.
The lesson here? That the best thing for CCSVI research moving ahead would be for the so-called “liberation” treatment to finally be liberated from MS itself.
Maclean’s talked to the people behind the trial, including Saskatchewan health minister Dustin Duncan, principal investigator Dr. Gary Siskin and Saskatchewan MLA Mark Docherty, who has been treated for CCSVI twice. The reasons for cancellations are both systemic and circumstantial–dating back to CCSVI being introduced in media as a “cure” for MS. That set off a chain of events—medical turf wars, research that conformed to drug-research protocols, a disconnect between science and patient experience.
“I think the one thing we can all agree on is that the burden of proof has not been met when it comes to CCSVI yet,” Siskin told Maclean’s.
What emerges is a story of continuing interest in CCSVI research as well as backstage drama: The Saskatchewan government, warned in July that the trial could be cancelled due to a lack of U.S. participants, tried to keep it afloat. Duncan reached out to provincial counterparts to ask them if they would help recruit volunteers, with no luck.
Now Saskatchewan is sitting on slightly less than $5 million earmarked for CCSVI research. Meetings are planned with patients and other “MS stakeholders” to figure out the next move, Duncan says: “Research may involve the “liberation” therapy but we’re realistic that may not be possible in a research context, so we may be looking outside of liberation.” And that would be the ultimate irony.
Longer story: here.