Alberta man says he's in medical limbo after receiving MS treatment in Mexico against doctor's advice

An Edmonton man says seeking medical treatment for multiple sclerosis outside of Canada has cost him follow-up care at home.

Daniel Relvas knew he was acting against his neurologist's advice when he applied to Clinica Ruiz in Puebla, Mexico, but felt he was running out of precious time.

The clinic had made him hopeful he'd be able to run around with his two kids for longer. Its stem cell treatment had a higher success rate than any other option he was eligible for at home, even if it was still undergoing trials to be used more broadly.

"[The neurologist] wouldn't give me a clear answer. She just said, 'Don't do it. Don't do it. Don't do it,'" he recalled.

But so far as Relvas could tell, he was the ideal candidate: young, not on medication yet, and early into his diagnosis with a lower disability score.

The clinic accepted him quickly. It seemed now or never.

He came back after a month in Mexico skinnier, bald and worn out. However, he quickly felt better. Except he didn't know if he was actually better because his neurologist soon informed him he would need to seek treatment at the MS Centre.

In the months since the Mexican treatment, Relvas hasn't been able to find another neurologist to book an MRI or analyze test results.

"People are constantly asking, like, did this work? Is he OK?," his wife, Jasna, said. "He looks OK and feels OK. I don't know if it worked because we can't see if there's new lesions or not."

TREATMENT STILL IN TRIAL IN CANADA

In early 2022, 35-year-old Relvas was diagnosed with relapsing-remitting multiple sclerosis after feeling poorly and experiencing symptoms of a more serious illness for a couple years.

But while meeting with a neurologist, Relvas says he was handed a list of drugs – a "menu," he and his wife call it, of medications that ranged in effectiveness but couldn't promise to be more than 50 per cent effective – and told to "pick one."

The Edmontonian was told he would have to find the treatment that worked best for him essentially through process of elimination, all the while risking seeing his disability score progress.

"That's the thing about it," Relvas told CTV News Edmonton in the late summer. "You can feel fine for a while, and then all of a sudden, you have a relapse and your vision starts going and you can't walk as far as you could. Fast forward, you could be in a cane or a wheelchair. It can be that fast. Or, you could be good for a very long time."

Jasna, back left, and Daniel Relvas, back right, pose for this undated photo with their sons.

They began researching other treatments used by MS patients, finding a method called hematopoietic stem cell transplantation.

According to the Mexican clinic, 80 per cent of its patients with Relvas' kind of MS see their condition improve or remain stable after treatment. The process consists of two rounds of chemotherapy, a stem cell extraction, more chemotherapy, and the stem cell transplant.

Actor Selma Blair received the same kind of treatment in the U.S., documenting the process in a recent documentary.

The treatment is still considered experimental in Canada. An Alberta government official confirmed it is offered at Calgary's Foothills Medical Centre as part of a clinical trial, but patients must meet criteria and be referred by a neurologist and transplant surgeon.

"Do you know anything about it?" Relvas asked his neurologist. "She was an automatic no."

It was scary, he said, to hear that from a professional. But the encouraging data and testimony he had found online were hard to ignore.

"I always wanted to be an active dad with my kids and play and do sports and be that strong dad. Not one to be wheeled around or stuff like that," Relvas said.

Daniel Relvas underwent hematopoietic stem cell transplantation at Clinica Ruiz in the summer of 2022 to treat relapsing-remitting multiple sclerosis.

'I FEEL ABANDONED'

Relvas claims to have never been told he wouldn't be able to continue seeing his neurologist if he did go to Mexico.

Clinica Ruiz asks patients to have their Expanded Disability Status Scale (EDSS) score and a few other things monitored upon returning home. Relvas learned he was being dropped by his neurologist when he called to make those appointments.

"[The receptionist] said, 'Your neurologist doesn't want to see you because she disagrees with what you did,'" he recalled.

Relvas says he also received a letter from his neurologist reiterating the stem cell transplant contravened previous advice and recommended he seek follow-up treatment elsewhere.

"I feel abandoned," the dad told CTV News Edmonton.

"What if I came back and I wasn't so good? I understand that if I needed some extra stuff, like something went wrong and I came back and said, 'Please help me.' But that's not the case. I just want to be seen like any other MS patient."

In a brief statement, Relvas' neurologist said he had been given "appropriate treatment and followup" and that CTV News Edmonton had been given "inaccurate and incomplete information."

According to a University of Alberta professor who is the national research chair in health law and policy, doctors have an ethical obligation to patients.

"When a patient clearly goes against your advice, it's not supposed to be a criteria for discharging them," Timothy Caulfield told CTV News Edmonton. "But you can understand how it would strain that physician-patient relationship in a way that a physician could think long term this is going to be detrimental.

"But despite that strain, you can't let that frustration prejudice the care of the patient. You still can discharge the patient, but you must do it in an ethical manner."

The College of Physicians and Surgeons told CTV News Edmonton it does not have rules regarding continuity of care for patients who receive treatment outside of Canada.

"However, any physician wishing to terminate their relationship with a patient must have reasonable grounds and adhere to our Terminating the Physician-Patient Relationship In Office-Based Settings standard," spokesperson Andrea Garland wrote in a statement.

STEM CELL TOURISM

That Relvas could have come back in worse shape – an issue frequently spawned by the so-called "stem cell tourism" industry – may be the crux of the matter, Caulfield speculated.

Daniel Relvas underwent hematopoietic stem cell transplantation at Clinica Ruiz in the summer of 2022 to treat relapsing-remitting multiple sclerosis.

Through his work, he knows of thousands of clinics around the world offering unproven stem cell therapies.

"There are some situations where patients go to these stem cell clinics and something really goes sideways. Tumours develop, et cetera. And they come back to Canada and they need medical care," he said.

He called the situation a fascinating intersection of several policy issues.

"On the other side, you have this patient who is desperate and just wants to get a treatment that is going to help their condition. And now that they've got it, they want continuity of care. So I get it," he said.

"They're Canadians; they need medical care. The health-care system should be there for them. We all make life choices. Those life choices can have consequences. And we hope that the health-care system is there for us."

A choice is simply how Relvas views it.

"If I make the choice to smoke…and my physician says, 'Hey, you shouldn't be smoking,' he's not going to refuse care because I'm making that choice," he suggested.

Yet, that has been his experience ever since returning from Mexico.

"I made my own phone calls. I called neurologists, hematologists, and they all said I needed a referral. And fair enough," Relvas said. "I talked to my doctor and he put in those referrals for hematology here at the U of A, Calgary, and they all told him, 'We're not seeing him because he did that procedure in Mexico.'"

He added: "I feel like I'm shunned from the whole medical field."

"I go do my blood work and I go on the computer and I look up my bloodwork results. I Google. I research. I'm pretty much my own doctor at this point."

As for the treatment Relvas received, Alberta Health said it is "awaiting further evidence, which is being gathered through these Phase 3 trials, to determine optimal treatment and eligibility criteria."

With files from CTV News Edmonton's Jeremy Thompson