Manitoban denied out-of-province care for rare condition says he's 'tortured every single day'

Tomas Ponzilius, 33, of Winnipeg lives with Ehlers-Danlos syndrome, a rare genetic condition that weakens connective tissue and causes cervical instability, leaving him in extreme pain and mostly bedbound. Manitoba Health denied his request for a $200,000 cervical fusion in Maryland, saying he had not proven the care is unavailable in Manitoba or elsewhere in Canada, and pointed him to an Ontario clinic that does not accept out-of-province patients. His neurosurgeon says the expertise is not available in Manitoba; he awaits an appeal ruling and says he has considered medically assisted dying.

A Winnipeg man with a rare condition says Manitoba's out-of-province referral process left him with no pathway to care, while the province says referral routes exist - a gap frontline workers will recognize when patients ask why specialized care is out of reach.