Manitoba man with rare genetic condition denied U.S. coverage for $200,000 cervical fusion surgery
Tomas Ponzilius, a 33-year-old Winnipeg resident with Ehlers-Danlos syndrome, has been denied out-of-province funding by Manitoba Health for a $200,000 cervical fusion surgery in the United States. Despite letters from his neurosurgeon and a Maryland specialist stating the required expertise is unavailable in Canada, the province rejected his request. Ponzilius, who suffers from chronic pain, vision problems, and breathing difficulties, says he is considering medically assisted dying while awaiting a decision on his appeal.
Tomas Ponzilius, a 33-year-old resident of Winnipeg, Manitoba, lives with Ehlers-Danlos syndrome (EDS), a rare genetic condition affecting connective tissues. He was diagnosed last year by an American doctor after years of unexplained dislocating shoulders and chronic pain. Previous shoulder stabilization procedures performed in Manitoba failed quickly, lasting only five months and two to three weeks respectively.
Ponzilius experiences extreme neck pain, vision problems, breathing difficulties, and frequent fainting due to cervical instability. He estimates that the social supports he relies on because of his condition cost approximately $50,000 per year, and he cannot afford necessary pain medication—some treatments cost $700 monthly—as it is not covered by the province. Ponzilius says he is considering exploring medically assisted dying due to the daily torture of his chronic pain.
To address his condition, Ponzilius requested approval from Manitoba Health to travel to the United States for a cervical fusion surgery estimated to cost about $200,000. He previously paid out of pocket for a consultation at Bethesda Physiocare in Maryland. Jan Dommerholt, owner of the clinic, recommended a specific U.S. surgeon for the procedure and stated that he does not know of any surgeons in Canada qualified to perform the specific cervical fusion Ponzilius needs.
In July, Ponzilius's neurosurgeon submitted a letter to the province's out-of-province referral program stating that the required surgical expertise and specialized rehabilitation services are not available in Manitoba. However, Manitoba Health denied Ponzilius's request for out-of-province care, stating it needed more proof that sufficient care was not available within Manitoba. A spokesperson for Manitoba Health stated that established referral pathways are available to clinics in Canada if Manitoba lacks specialized care, and claimed there are neurosurgeons in the province trained to manage complex spinal conditions including EDS.
Manitoba Health directed Ponzilius to the GoodHope Ehlers-Danlos Syndrome Clinic in Ontario, but that clinic told him it is not accepting out-of-province patients. Tammy Stadt, resources director for the EDS Canada Foundation, argued that requiring patients to exhaust other access to care in Canada places an unfair burden because many specialists do not take referrals from other provinces.
Ponzilius is currently awaiting a decision on his appeal.