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- calendar_today October 26, 2026
Manitoba Resident Faces Barriers to Out-of-Province Medical Care
Tomas Ponzilius, a Winnipeg man living with Ehlers-Danlos syndrome—a rare genetic condition—says chronic pain and barriers to specialized medical care have left him contemplating medically assisted dying. After being denied out-of-province coverage for a crucial cervical fusion surgery, Ponzilius describes his daily life as "torture."
The Daily Reality of Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome affects connective tissues, causing Ponzilius extreme neck pain, vision and breathing issues, and frequent dislocations. At 33, he now spends most days bedridden in his Winnipeg home, unable to afford sufficient pain medication. He estimates his non-covered treatments cost about $700 per month, and without them, his suffering intensifies.
Seeking Cervical Fusion Surgery in the U.S.
Ponzilius is seeking approval from Manitoba Health to travel to the U.S. for a cervical fusion, a surgery intended to stabilize his neck. The procedure could cost approximately $200,000, but he argues the long-term social support costs caused by his condition are also substantial—he estimates they total $50,000 per year. Despite submitting requests twice for out-of-province care, both were denied on the grounds that Manitoba needed more evidence that the necessary care wasn't available locally.
Medical Opinions Highlight Gaps in Provincial Care
In July, Ponzilius's neurosurgeon supported his application, writing that the rarity and complexity of his case requires surgical expertise and rehabilitation services unavailable in Manitoba. Nonetheless, his request was rejected, and he is currently awaiting a decision on his appeal to Manitoba Health. A spokesperson for the health minister said the province cannot comment while the appeal is ongoing.
According to Jan Dommerholt, owner of a Maryland clinic recognized for its Ehlers-Danlos care, there are only a small number of surgeons globally qualified to perform the needed procedure, none of whom are in Canada. Dommerholt noted that typical cervical fusion is particularly risky with Ehlers-Danlos patients due to weaker connective tissue.
Referral Pathways and Systemic Challenges
Ponzilius was previously directed to Ontario's GoodHope Ehlers-Danlos Syndrome Clinic after being denied U.S. treatment. However, that clinic does not accept out-of-province patients. He paid for a consultation at the Maryland clinic out of pocket. According to the EDS Canada Foundation's resources director, Tammy Stadt, Ponzilius's situation reflects systemic issues: provincial requirements to exhaust in-Canada options put undue burden on patients, especially when Canadian specialists may not take out-of-province referrals or possess needed expertise.
While Manitoba Health states that neurosurgeons in the province are trained to manage complex spinal conditions, Ponzilius has unsuccessfully sought clarification on which local surgeons have the necessary expertise for Ehlers-Danlos syndrome. He cites the example of another patient who successfully appealed a similar denial in 2024, but says he has lost faith in the healthcare system.
Patient Advocacy Amid Ongoing Struggles
Ponzilius’s experience highlights frustrations many patients with rare and complex conditions face in accessing specialized medical care through provincial health coverage. Although he still hopes for a positive appeal outcome, Ponzilius reflects on what his life might have been like with earlier intervention: "I wanted a childhood... I wanted my 20s. I could still save my 30s."
Source: cbc.ca.
