Fernando Caballero misses the way he used to be: cheerful, the life of the party and the protector of his family. The 67-year-old was active and enjoyed skating in the summer, ice skating in the winter and dancing year-round.
But now, he uses a cane or walker to get around and takes various nerve pain medications to help manage Guillain-Barré syndrome (GBS), a rare neurological disorder he developed after receiving the Oxford-AstraZeneca vaccine COVID-19 in early 2021.
He tracks his rehabilitation progress in part by counting how many small dance steps he can take in a row.
“I’ve lost a lot,” Caballero told CBC Toronto in Spanish as his daughter translated. “I feel very stuck with what I can do now compared to what I was able to do before.”
Toronto Public Health conducted an investigation that found Caballero developed GBS as a result of the vaccine. He advised her not to get another dose of the vaccine.
GBS causes the body’s immune system to damage nerve cells, causing pain, numbness and muscle weakness. Although rare, it can be linked to other vaccines, such as the flu shot.
Seventy percent of people diagnosed with GBS make a full recovery, and fewer than 15 percent experience long-term weakness severe enough to require a walking aid, according to the US government’s National Institute of Neurological Disorders and Stroke.
Caballero believes he qualifies for financial support through the federal government’s relatively new Vaccine Injury Support Program (VISP). But he has been waiting for his claim to be processed for more than a year. He recently made the difficult decision to return to work to help support his family.
“We can’t take it anymore. We really can’t,” Caballero says he told his wife at the time.
Caballero is pictured in April 2021 after receiving the vaccine, his first and only immunization against COVID-19. (Sent by Amalia Caballero)
Caballero, who was a mechanical engineer in Colombia before moving to Toronto in 2004, now works in maintenance and custodial work with limited mobility, pain in his legs and feet and numbness in his hands. He was hospitalized for over a month, unable to work for a year, and had to rely on the money he was saving for retirement.
“Any compensation I could get would help us get back to a level where we were before,” he said. “It’s very difficult to have to work and not be able to stop.”
The VISP program, which is designed to support people who are seriously and permanently injured after receiving a vaccine approved by Health Canada on or after December 8, 2020. It began accepting claims on June 1, 2021. Since then eight of the 774 applications it received have been approved. These could include cases involving vaccines other than those designed to protect against COVID-19. This number does not include applications from Quebec, which has its own program.
Seventy-one of the claims were dismissed. That means 90 percent of claimants are waiting while they collect, review their medical records, or have the review board make a decision.
The consultancy that manages VISP says several factors affect wait times
Caballero has provided all the information and records he can. His daughter Amalia says she’s been asked several times about an upgrade, but not given much information.
“I’m very disappointed,” Amalia said of the wait and lack of response from the show. “I wish she didn’t have to work. I just want her to breathe a little, not have to worry so much about the family.”
The VISP is funded by the federal government and administered by an external firm, Raymond Chabot Grant Thornton (RCGT) consultancy.
LOOK | Fernando Caballero’s daughter gets emotional when she talks about her father:
Amalia Caballero says it’s hard to see her father struggle
Amalia Caballero says she wishes she could do more for her father after being diagnosed with Guillain-Barré syndrome. He returned to work while waiting for his application for the Canadian Vaccine Injury Support Program to be approved. It’s been over a year.
When asked about Caballero’s application, Edward Maier, the program’s project manager and senior case manager, said the company cannot discuss individual cases for privacy reasons. It did not disclose the extent of compensation awarded to applicants and the amounts mentioned are paid on a case-by-case basis.
“All requests received vary in terms of nature, complexity and various other factors that could affect processing time,” he said.
Adverse reactions to the vaccine “extremely rare”, says the doctor
Of the more than 87 million doses of COVID vaccine 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 an additional 32 reports in the province, but there was insufficient evidence to define them as confirmed cases when using the Brighton Collaboration diagnostic certainty level, which is used around the world to help define cases of adverse reactions to COVID-19 vaccines, according to Public Health Ontario.
Caballero spent more than a month in the hospital after showing signs of Guillain-Barré syndrome, a rare neurological disorder. (Sent by Amalia Caballero)
As of June 24, 9,878 serious adverse reactions to the COVID-19 vaccines had been reported across Canada, accounting for 0.011 per cent of all doses administered, according to Health Canada. A case is considered serious if it is life-threatening, requires hospitalization or prolonged hospitalization, results in significant disability, birth defect, or death.
Dr. Karina Top, a pediatric infectious disease physician in Halifax who directs the Specialty Immunization Clinic Network with the Immunization Research Network of Canada, says serious adverse events from vaccines are “extremely rare.”
“We have been monitoring the safety of the COVID vaccines very closely, and these vaccines have been shown to be very safe,” he said.
Top, whose research focuses on vaccine safety surveillance and adverse reactions, says GBS is specifically more associated with the Oxford-AstraZeneca and Johnson & Johnson vaccines for COVID-19 than Canada’s ‘has moved away from using. He says the rate of developing GBS is two to three cases out of every million people who receive these vaccines. He also says there is a higher chance of getting GBS from COVID-19 than from a vaccine.
“In one study, [the rate] it was closer to about 14 cases per million, so several times more if you get COVID than if you get one of those vaccines,” he said.
Health Canada says that when cases with insufficient information to confirm a diagnosis are removed, the number of cases of GBS that people in Canada developed after receiving the Oxford-AstraZeneca vaccine is no higher than would normally be expected in the general population. .
“I hope I can get back to my old self”
Within two weeks of receiving the vaccine, Caballero began experiencing debilitating back pain and fell down a flight of stairs after losing control of her legs. He visited the hospital and was sent home, but the pain worsened and he continued to fall. He was eventually diagnosed with GBS.
While some recover completely, others do not and can become paralyzed in the most severe cases. Caballero says that he has to pace himself at work and has the help of his colleagues.
“I’m really tired after work and I’m in pain,” he said.
Caballero is diligent about following his rehabilitation exercises. Now he struggles the most with balance on one foot, but he hopes that one day he will be able to dance again. (Sabah Rahman/CBC)
Caballero still supports vaccines. Toronto Public Health advised her to talk to specialists about whether she can get an mRNA vaccine, such as those produced by Pfizer-BioNTech or Moderna. He says that while he’s afraid of another adverse reaction, he’s open to getting an mRNA vaccine if a doctor thinks it’s 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 is diligent with his rehab exercises and hopes to one day be able to skate again, albeit with the assistance of his walker.
There are so many things we take for granted,” she said. “I hope I can get back to my old self, but I know it’s a very long process and sometimes it’s not perfect.”