News that the neurosurgeon hired to launch a groundbreaking adult epilepsy surgery program in Manitoba is giving up after five years and moving on was "disheartening" déjà vu for Calgary’s Dr. Juan Pablo Appendino.
The pediatric epilepsy neurologist at Alberta Children’s Hospital said Friday that he was hired in 2010 to launch the same program at Health Sciences Centre in Winnipeg.
After five years of waiting for funding and support for the program, Appendino said he gave up and moved to Calgary in 2015.
He was replaced by Dr. Demitre Serletis, a neurosurgeon hired from the U.S. After five years of trying to get the program up and running, Serletis told the Free Press this week that he is leaving Manitoba because the province failed to fulfil its promise to fund the program it hired him to establish.
Manitoba now has to send adults out of province for epilepsy surgery.
Appendino contacted the Free Press when he saw Thursday’s story about Serletis leaving Winnipeg, a place he and his family had grown to love, because of a lack of operating funds to establish the adult epilepsy surgery program.
"It has been ongoing for many years and I believe it is a very important issue for the community that I dearly love and miss every single day," Appendino said Friday.
Both he and Serletis say epilepsy surgery is one of the most cost-effective treatment strategies in modern times. Provincial programs that invest in advanced surgeries have been able to recuperate the costs within two to three years, Serletis said in an interview Wednesday. In the Winnipeg region there are an estimated 6,000 patients who would be eligible for surgery and 19,000 who have epilepsy.
“It has been ongoing for many years and I believe it is a very important issue for the community that I dearly love and miss every single day.” – Dr. Juan Pablo Appendino
Seizure-ending surgery means long-term savings for the health-care system with people not showing up in ICUs and needing MRIs and other expensive procedures, said Appendino. The life-changing operation allows people to regain their independence — their ability to work and drive and thrive. The near-term cost of performing epilepsy surgery, however, is high, said the doctor from Argentina who trained there and in Toronto.
It starts with customized electrodes implanted in the brain or on its surface for seizure monitoring to identify the site in the brain from which the seizure originates. Once it is identified, patients are scheduled for surgery to remove the site that’s the source of the seizures.
"Every single electrode that you put in the brain of a patient may cost a thousand to five thousand dollars — just the electrode," Appendino said. "So you put in 10 electrodes, it will cost $10,000 just to start monitoring the patient and find out where the disease is coming from. And that cost payback is very long-term — like 10 years," he said in an interview.
"No politician will invest in a result in 10 years because their (election) cycle is no longer than four years. So they want things now, quick. They don’t lie. They create expectations. They play with our hopes that something is going to happen. But they know very deep that it’s never going to happen when they recruit people. That’s my feeling," said the Calgary neurologist.
Manitoba’s follow-through failure when it comes to funding epilepsy surgery was illustrated in a graphic presentation by Winnipeg epileptologist Dr. Marcus Ng in 2019. A series of historical archives and news clippings over the years show alternating announcements of experts arriving in Winnipeg to perform groundbreaking epilepsy surgeries followed a few years later by notices that they’ve given up on Manitoba and are leaving for greener, more fertile pastures to do their work.
The lack of treatment for epilepsy patients in Manitoba was laid bare earlier this month in a peer-reviewed journal article co-authored by Ng subtitled "A public health imperative hidden in plain sight." It focused on epilepsy patients in the Canadian Arctic who are medically evacuated to Winnipeg, their designated neurosciences hospital site with "nil to few" epilepsy care resources.
"Specifically, there has been an ongoing neurologist shortage over 11.25 years," said the article published in the Open Access Journal of the International League Against Epilepsy. "There is no stroke unit. Similarly, there is no dedicated geographical specialty neurology ward. Adult epilepsy monitoring occurred ... on two beds borrowed from an ill-equipped orthopedics ward, until their indefinite closure by COVID-19."
On Friday, Ng — who works at the Health Sciences Centre — declined to comment on the lack of epilepsy surgery and treatment offered in Manitoba. The associate professor of neurology at the University of Manitoba did, however, raise a question.
"When a condition is highly treatable are we, as a society, prepared to leave these people behind?"
After 20 years of reporting on the growing diversity of people calling Manitoba home, Carol moved to the legislature bureau in early 2020.