Manitoban denied out-of-province care for rare condition says he's 'tortured every single day'
asserted
he → deny → condition
Tomas Ponzilius, who lives with Ehlers-Danlos syndrome, says he's considered medically assisted death
Since he was a child, Tomas Ponzilius wanted to be a lawyer, a father and a disability rights advocate.
asserted
Ponzilius → live → syndrome
But these days, he spends most of his time in bed in his home in Winnipeg, before the chronic pain he lives with causes him to pass out, he says.
asserted
he → spend → Winnipeg
He's made two previous requests to get out-of-province treatment, but both were denied, leaving him considering exploring medically assisted dying.
asserted
both → make → dying
"I don't want to die, but I'm being tortured every single day," the 33-year-old said.
asserted
old → want → ?
Ponzilius has Ehlers-Danlos syndrome, a rare genetic condition that affects connective tissues in the body.
asserted
that → have → body
It makes the collagen in his body weaker and causes cervical instability, or instability at the part of the spine holding up the head.
asserted
collagen → make → head
Because of this, he experiences vision and breathing problems, along with extreme pain in his neck.
asserted
he → experience → neck
Ponzilius said he's run out of pain medication because he can't afford it and it's not covered by the province, and is cutting back on other treatments for the pain that cost $700 per month.
asserted
that → say → month
Ponzilius lives with vision and breathing problems, along with extreme pain in his neck due to Ehlers-Danlos syndrome.
asserted
Ponzilius → live → syndrome
He's asking Manitoba Health to approve his request to go to the U.S. for a cervical fusion, a surgical procedure that would stabilize his neck.
asserted
that → ask → neck
It would cost about $200,000, but getting it would be "everything," he said.
asserted
he → cost → it
He acknowledges the cost sounds high, but estimates the social supports he's forced to rely on because he's in too much pain to cost $50,000 per year.
asserted
he → acknowledge → year
"Our government might say, 'Well, we need to save money,'" he said.
uncertain
he → say → money
"Actually, your position is that we can cost our system."
asserted
we → cost → system
'Left with no pathway'
In July, his neurosurgeon submitted a letter to the province's out-of-province referral program.
asserted
neurosurgeon → leave → program
It states that the "rarity and complexity" of Ponzilius's condition means the required surgical expertise for the procedure, and the specialized rehabilitation services he'd need, are not available within Manitoba.
asserted
he → state → Manitoba
His request was rejected, with the province saying it needed more proof there wasn't sufficient care in Manitoba.
asserted
it → reject → Manitoba
Ponzilius is currently waiting for Manitoba Health to decide on his appeal.
asserted
Health → wait → appeal
In the meantime, living with the disease makes it feel like "every single day I wake up, I roll a 20-sided die.
asserted
I → live → die
I roll too low, I'm dead," Ponzilius said.
asserted
Ponzilius → roll → ?
"You can't wait with this."
asserted
You → wait → this
CBC asked the health minister for a response on Ponzilius's case, but a spokesperson said the province can't comment while it's before the appeals board.
asserted
it → ask → board
Though Ponzilius was born with Ehlers-Danlos, he was only diagnosed last year, by an American doctor.
asserted
he → bear → doctor
For most of his life, doctors here couldn't explain his dislocating shoulders and chronic pain, he said.
asserted
he → explain → shoulders
I wanted a childhood.…
asserted
I → want → childhood
I wanted my 20s.
asserted
I → want → 20s
I could still save my 30s.
uncertain
I → save → 30s
He's had several procedures done in Manitoba in an attempt to stabilize his shoulders.
asserted
procedures → have → shoulders
The results were meant to last years, but the first lasted five months, the second just two or three weeks.
asserted
second → mean → ?
"It is not that we don't have excellent care in Manitoba, but this is a service gap," Ponzilius said.
asserted
Ponzilius → have → Manitoba
"We just don't have capacity, frankly, in Manitoba and we're left with no pathway."
asserted
we → have → pathway
Referred to U.S. clinic
Ponzilius was first rejected for out-of-province care last year, when he was referred to see Jan Dommerholt, who owns a Maryland clinic recognized by the non-profit Ehlers-Danlos Society for providing specialized care.
asserted
who → refer → care
Instead, Manitoba Health told him to go to the GoodHope Ehlers-Danlos Syndrome Clinic in Ontario, one of a few clinics in Canada that specializes in the condition.
asserted
that → tell → condition
In a statement emailed to CBC in response to questions about Ehlers-Danlos in Manitoba, a provincial spokesperson said "established referral pathways are available" to clinics in Canada if Manitoba lacks the specialized care a patient might need.
But the Ontario clinic told Ponzilius it isn't accepting out-of-province patients.
uncertain
it → email → patients
Ponzilius says Manitoba Health should've known that.
asserted
Health → say → that
The same information came up in a separate application for out-of-province coverage from a woman with Ehlers-Danlos he spoke with when she applied.
asserted
she → come → Danlos
She successfully appealed the province's initial denial of out-of-province care in 2024.
asserted
She → appeal → 2024
Ponzilius paid for his visit to the Maryland clinic out of pocket.
asserted
Ponzilius → pay → pocket
Jan Dommerholt owns Bethesda Physiocare, which provides specialized Ehlers-Danlos syndrome care.
asserted
which → own → care
…and 18 more, not listed.
The Aporia
