“Here, what they offer us, it is left to fall blind”

Photo Annie T. Roussel
Laurie, 11, is one of the most young people in Quebec over the past decade, is turning to Cuba to undergo an operation and treatment for his retinitis pigmentosa. His family tries various means to raise funds to pay the costs of the trip of three weeks.

Sophie Side

Monday, February 19, 2018 00:00

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Monday, February 19, 2018 00:00

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Despite the contraindications of the ophthalmologists here, a young girl from Quebec, born profoundly deaf and whose vision is deteriorating is preparing to fly to Cuba for treatment, in the hope of not becoming blind.

“You have nothing to lose,” says Christine Corriveau, and the mother of Laurie Gauthier. The young 11 year old daughter was diagnosed with Usher syndrome type 1, a rare genetic disease that is characterized by profound deafness from birth and sight loss that begins at the first ten years of life.

Thanks to its two cochlear implants, the bubbly young girl is able to express themselves orally and hears everything that happens around it. However, it is not the case for his vision : due to her retinitis pigmentosa, she sees him as with blinders on, while he has only twenty degrees of field of vision.

This is two times less than it was a few years ago. And if nothing is done, the blindness is watching Laurie. The Gauthier know not only when, as the degenerative disease progresses differently in each individual.

An operation controversial

“She goes all the time by regressing, points out his father Stéphane Gauthier. Here, everything they offer us, it is the drop blind, and they don’t want to go to Cuba, ” loose the man, explaining that no treatment to cure or even slow the progression of the disease does not exist in Canada.

The only option offered to them is a delicate operation and eye treatment (ozonothérapie, electrostimulation) proposed in the last twenty years by the medical services cuban, which could stabilize the vision of Laurie. A controversial solution that is not recommended by the experts here.

Gold, buoyed by many positive testimonials of Quebecers who have lived the experience, Gauthier chose to travel to Cuba this winter. “The first few years after diagnosis, they let it go, since the ophthalmologist told us not to go there,” says the mother of Laurie, Christine Corriveau.

“But then, his sight down and then it does nothing, and Cuba can’t get any worse Laurie. So we said that we didn’t have much to lose to try it out “, expose it.

At least 10 000 $ CA

Only for the medical services received on site, the bill jumps to about $ 10,000 CDN. Moreover, as the cuban doctors do not perform this surgery before the age of 10 years, it is once the girl on the spot that they will decide whether to operate or not.

According to Alain Leclerc, president of Health Services International (SSI), a company that makes the bridge between the medical services to cuban and patients, between 100 and 150 people have used the services of ISS for 10 years for the retinitis pigmentosa.

“Since I’m here, in 2011, I have been in contact with one person who told me that in his case, it hadn’t worked,” he said, stressing that the solution for cuba is not available for ” cure “, but to “stop” the main effects of the disease. “In 92% of cases, it works,” says Mr. Leclerc.

Promising drug for the price astronomical

While there is in Canada no treatment to cure or even stop the effects of retinitis pigmentosa, which can lead to total blindness, a us drug promising, but extremely expensive, just to be marketed in the United States.

This is a major breakthrough, ” says Dr. Cynthia Qian, rétinologue, since the Luxturna becomes the first global processing scientifically proven that aims to cure or improve the vision of patients who have a form of retinitis pigmentosa. It has been approved by the u.s. Food and Drug Administration (FDA) last December after ten years of research.

However, it is only a first step. The Luxturna, one of the drugs the most expensive in the world (850 000 $ for the two eyes), is dedicated to treat only one type of retinitis pigmentosa, RPE65, a form rather rare in this degenerative disease of the eye. In total there are sixty different types of retinitis pigmentosa. “It is still very promising, mentions the specialist. The hope is that this treatment model could spread and come to the other forms of retinitis pigmentosa including Usher, that is a very widespread and studied, ” stresses Dr. Qian, adding that it will be necessary to wait several years before seeing such progress.

A solution not recommended

As to the cuban, the rétinologue explains that the ophthalmologists do not recommend that Quebec was mainly due to a lack of scientific evidence. “They suggest that it works because the oxygen [in the eye] is increased, but there is no scientific measurement objective to measure their data. […] And this is also the approach a little bit overall in Cuba that the same treatment works for different types of retinitis pigmentosa and that makes people a little suspicious “, she said, recalling that it is a disease ” genetic “.

“So, on a scientific basis, there is nothing that goes with the “oxygen,” “, raises the one who, all the same, understands the desperation of some.

“It is sure that as a doctor, I can’t recommend it. Is this for me, if I was patient, I would do it differently ? I think it is something else. I can understand that some of my patients want to go there because they prefer to do something than to wait until the vision is lost gradually, “says Dr. Qian, who concedes that no case of complications “huge” for the return of Cuba has been identified. “Is that someone has completely lost his eye because of that ? Not necessarily, she said. But is this that it is pointless action that doesn’t need to be installed ? Maybe. “

The solution cuban not recommended

“The canadian Society of ophthalmology (SCO) does not recommend the treatment for cuban patients with retinitis pigmentosa, in the absence of objective evidence and peer-reviewed supporting its efficacy and safety and taking into account the fact that the treatment seems to have exacerbated the symptoms of some patients “

— Extract of a statement of the canadian ophthalmological Society published on his web site

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