Ever since their son Michael was diagnosed with a rare genetic disorder, Terry and Georgia Pirovolakis have been racing to find a cure. They were getting close, and then everything came grinding to a halt.
“We had a whole bunch of researchers around the world doing different things. All of our research has basically stopped,” says Terry Pirovolakis.
Michael is two-and-a-half years old and has spastic paraplegia type 50 (SPG-50), a rare neurodegenerative disease caused by a missing gene that is progressively robbing him of his ability to walk.
Over the past year, his parents have raised more than $1 million to help finance a clinical trial for custom gene therapy that promises to halt the disease. But the COVID-19 pandemic has paralyzed research around the world, and their hope along with it.
“It’s hard to accept the fact that we were making so many gains,” says Georgia Pirovolakis. “You know, we were hoping he would be walking by September.”
Michael is just one of the many casualties of the global health crisis. From new gene therapies to help children like Michael, to the latest in cancer treatments, thousands of clinical trials deemed non-essential are on hold.
Brad Wouters is executive vice-president of Science and Research at Toronto’s University Health Network, Canada’s largest academic hospital. He says an example of the impact is a patient currently being treated for pancreatic cancer.
“He was part of a medical research study here that looked at the underlying genetics of that tumour, and that information revealed a potential new therapy that could be very effective for that patient in immunotherapy. But we only have access to that drug through a clinical trial. And so he won’t get it.”
Wouters says the only new research happening at the moment is around COVID-19. About 200 of UHN’s researchers have pivoted to that, but thousands more risk losing their jobs, Wouters says, because in the past month alone UHN has lost $6 million in industry funding. It’s why UHN is asking the federal government for help.
“We’ve been doing everything we can to try and support these jobs and support this research sector,” says Wouters. “But it’s over a month now, and we’re really at a tipping point where we’re going to see significant job losses if something can’t be done.”
Canada’s $3-billion medical research industry relies on that brain trust, much of it made up of international students, says Martha Crago, vice-principal of Research and Innovation at McGill University.
“We wouldn’t want to lose this wonderful set of brains coming into our country and helping bring solutions to the public domain,” Crago says. “We need to do what we can to keep them.”
The pandemic will be over at some point, Crago says, and those researchers will be needed to help regain lost scientific momentum.
‘He’s going to degrade’
Meanwhile, the Pirovolakis family fear they’re running out of time.
All the therapies Michael has been doing to maintain the movement he has now, like physical and occupational therapy, have been cancelled. They’re trying to improvise at home to keep him moving, and to keep their hope alive too.
The stalled research efforts means a cure for Michael may be delayed for up to a year. That could mean the difference between him ever walking or not.
“It means he’s going to degrade,” says Terry Pirovolakis. “The progression of the disease is going to kick in, he’ll slowly become more and more paralyzed.”
It’s why the couple are trying to keep research into Michael’s gene therapy going.
They’re considering using money the family has raised so far to finance early toxicology tests on a potential treatment researchers in the U.S have already developed. They are also lobbying Canada’s National Research Council to help develop a treatment or help with funding.
Georgia Pirovolakis says there are so many unknowns, and she can’t bear to dwell on them.
“I just look at one day at a time. I’m not thinking about, you know, tomorrow. I’m not thinking about one month from now. I’m not thinking about the research stopping, him potentially not getting cured.”
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