Dartmouth woman who is going blind looks to Cuba for treatment
Doctor raises concern about lack of information on surgery
A Dartmouth woman's fundraising efforts to undergo a costly eye surgery in Cuba has experts warning about the dangers of travelling abroad for medical care.
Adrienne LeClair-Hamm, who lost part of her sight as a child, was recently diagnosed with a degenerative eye disease called retinitis pigmentosa. When her doctor told her she'd be completely blind within a year, she started researching options and learned treatment isn't available in Canada.
There's no cure for retinitis pigmentosa, but a clinic in Cuba promises to stop the disease from getting worse. The $18,000 treatment involves several procedures, including opening the bottom of the eye and inserting liquid that encourages the cells to grow.
"The thing that frightens me the most about this whole setup is … not to be able to look at my sons' faces and see them smile. It's going to be a huge loss," said LeClair-Hamm, who set up a Go Fund Me page to raise the money.
Procedure a 'black box'
As of Aug. 21, LeClair-Hamm had raised just over $4,800. She knows there are risks involved with the surgery, but said, "from what I'm reading, honestly, it's looking darn good. Really, it's looking excellent."
However, LeClair-Hamm's doctor doesn't support the procedure, and neither does Dr. Marcelo Nicolela, head of ophthalmology at Dalhousie University.
Nicolela said there are too many unanswered questions.
We really don't know the possible harms of this procedure.-Dr. Marcelo Nicolela, head of ophthalmology at Dalhousie University
The treatment has been around for about 20 years, he said, "but to date, there hasn't been any report in the medical literature talking about outcomes or even how it's done."
"So it's really a black box that nobody outside the clinics in Cuba know much about."
While it's possible the clinic has found a safe and effective procedure, Nicolela said it's also likely this is a money-making venture.
"There has been complications anecdotally reported by doctors of patients who went to Cuba and had problems afterwards. So we really don't know the possible harms of this procedure," he said.
Patients need followup care
If complications do arise post-surgery, Robert Huish, who specializes in global health, said patients who travel for surgery can end up without the care they need.
Huish, an associate professor in international development studies at Dalhousie University, has written a book about medical tourism called Where No Doctor Has Gone Before: Cuba's Place in the Global Health Landscape.
He's worried about what happens when patients come home — something he argues isn't discussed enough.
"The problem is that surgery is not just the process of putting a knife into a patient and doing the one procedure. Surgery and the ethics of it is much more extensive," he said, adding patients often end up in emergency rooms back in Nova Scotia because they don't have a surgeon who can refer them for followup care.
Numbers still small in Nova Scotia
According to a report by the Fraser Insitute in B.C., an estimated 63,459 Canadians travelled outside the country in 2016 for non-emergency treatment.
Huish said Nova Scotians only make up about a couple hundred of those cases, but if more choose to leave, "it would be an option to disincentivize investing in specialist and the facilities needed here."
While there's no treatment for retinitis pigmentosa currently in Canada, Nicolela said research trials are underway.
With files from Carsten Knox