Fernando Caballero misses the way he used to be: happy-go-lucky, the life of the party and the protector of his family. The 67-year-old was active and enjoyed rollerblading in the summer, ice skating in the winter and dancing all year round.
But now, he uses a cane or walker to get around and takes several medications for nerve pain to help manage Guillain-Barré Syndrome (GBS) — a rare neurological disorder he developed after getting the Oxford-AstraZeneca COVID-19 vaccine in early 2021.
He tracks his rehabilitation progress in part by counting how many small dance steps he can do in a row.
"I've lost a lot," Caballero told CBC Toronto in Spanish as his daughter translated. "I just feel very trapped with what I can do now compared to what I was able to do before."
Toronto Public Health conducted an investigation, which found Caballero developed GBS as a result of the vaccine. It recommended he not get another dose of the vaccine.
GBS causes the body's immune system to damage nerve cells resulting in pain, numbness and muscle weakness. While rare, it can be linked to other vaccines, such as the flu shot.
Seventy per cent of people diagnosed with GBS make a full recovery, and fewer than 15 per cent experience long-term weakness severe enough for a walking aid, according to the U.S. government's National Institute of Neurological Disorders and Stroke.
Caballero believes he meets the requirements to receive financial support through the federal government's relatively new Vaccine Injury Support Program (VISP). But he's been waiting for more than a year for his claim to be processed. He recently made the difficult decision to return to work to help support his family.
"We just can't hold on anymore. We really can't," Caballero says he told his wife at the time.
Caballero, who was a mechanical engineer in Colombia before moving to Toronto in 2004, is now doing maintenance and custodial work with limited mobility, pain in his legs and feet and numbness in his hands. He was hospitalized for more than a month, wasn't able to work for a year and had to rely on the money he was saving for retirement.
"Any compensation that I could get would help put us back on a level where we were before," he said. "It's just so hard having to work and not being able to stop."
The VISP program, which is designed to support people seriously and permanently injured after receiving a vaccine approved by Health Canada on or after Dec. 8, 2020. It started accepting claims on June 1, 2021. Since then eight of the 774 applications it received have been approved. Those could include cases linked to vaccines other than those designed to protect against COVID-19. That number doesn't include applications from Quebec, which has its own program.
Seventy-one of the claims were rejected. That means 90 per cent of claimants are waiting while their medical records are collected, reviewed, or for the review board to make a decision.
Consulting firm running VISP says several factors impact wait times
Caballero has provided all the information and records he can. His daughter Amalia says she's inquired several times about an update, but isn't given much information.
"I'm very disappointed," Amalia said of the wait and lack of response from the program. "I wish he didn't have to work. I want him to just have a little bit of a breather, not have to worry so much for the family."
The VISP is funded by the federal government and administered by an outside company, Raymond Chabot Grant Thornton (RCGT) consulting.
WATCH | Fernando Caballero's daughter gets emotional when talking about her father:
When asked about Caballero's application, Edward Maier, a project lead and senior case manager for the program, says the company can't discuss individual cases for privacy reasons. He wouldn't disclose the range of compensation given to applicants and said amounts are paid out on a case-by-case basis.
"All applications received vary in terms of nature, complexity and several other factors that could impact the timeline for processing," he said.
Adverse vaccine reactions 'extremely rare,' doctor says
Of the more than 87 million COVID vaccine doses administered in Canada, there have been 21 confirmed cases of GBS linked to them as of June 24, according to Health Canada. Four of those cases were in Ontario, according to Public Health Ontario.
There were 32 additional reports in the province, but there was not enough evidence for them to be defined as confirmed cases when using the Brighton Collaboration diagnostic level of certainty, which is used around the world to help define cases of adverse reactions to COVID-19 vaccines, according to Public Health Ontario.
As of June 24, 9,878 serious adverse reactions to COVID-19 vaccines had been reported across Canada, which amounts to 0.011 per cent of all doses administered, according to Health Canada. A case is considered serious if it's life-threatening, requires in-patient or prolonged hospitalization, results in a significant disability, birth defect or death.
Dr. Karina Top, a pediatric infectious diseases physician in Halifax who leads the Special Immunization Clinic Network with the Canadian Immunization Research Network, says serious adverse events to vaccines are "extremely rare."
"We've been monitoring the safety of COVID vaccines very closely and it's shown that these vaccines are very safe," she said.
Top, whose research focuses on vaccine safety surveillance and adverse reactions, says GBS specifically is associated more so with the Oxford-AstraZeneca and Johnson & Johnson vaccines for COVID-19, which Canada has moved away from using. She says the rate of developing GBS is two to three cases out of every one million people who get those vaccines. She also says there's a higher chance of getting GBS from COVID-19 than from a vaccine.
"In one study, [the rate] was closer to about 14 cases per one million, so several times higher if you get COVID than if you get one of those vaccines," she said.
Health Canada says when the cases that don't have enough information to confirm a diagnosis are removed, the number of GBS cases people in Canada developed after getting the Oxford-AstraZeneca vaccine isn't higher than what would be normally expected in the general population.
'I hope I can get to my old self'
Within two weeks of receiving the vaccine, Caballero started experiencing debilitating back pain and fell down a flight of stairs after losing control of his legs. He visited the hospital and was sent home, but the pain got worse and he kept falling. Eventually, he was diagnosed with GBS.
While some fully recover, others do not and can become paralyzed in the most severe cases. Caballero says he has to pace himself at work and relies on help from his colleagues.
"I'm very tired after work and I do feel pain," he said.
Caballero still supports vaccinations. Toronto Public Health advised him to speak with specialists about whether he can get an mRNA vaccine, such as those produced by Pfizer-BioNTech or Moderna. He says while he's fearful of another adverse reaction, he's open to getting an mRNA vaccine if a doctor deems it safe, but he hasn't been able to get a clear answer.
Caballero says doctors have told him they don't expect his condition to improve much more, but he's diligent with his rehabilitation exercises and is hopeful he'll one day be able to skate again — even if he's assisted by his walker.
There's just so many things that we take for granted," he said. "I hope I can get back to my old self, but I know that it's a very long process and sometimes it's not perfect."