2023-12-22 23:39:40
Unfortunately, we cannot yet detect them all – two diseases, in particular, escape government programs. In figures, we are talking regarding one person in 39 carrying a genetic disease in Saguenay–Lac-Saint-Jean as well as in the North Shore and Charlevoix.
The spokesperson for the Corporation for Research and Action on Hereditary Diseases, Pierre Lavoie, finds the situation unacceptable.
“The National Institute of Excellence in Health and Social Services (INESSS) decided to do the same study that we did at the time to validate the program. This is what we find aberrant,” he explained to the Noovo Info 17 newsletter. “In Quebec, there are 100 orphan and debilitating genetic diseases without treatment which must be detected, but which are taking a long time. Currently, we have been waiting for three years for cystic fibrosis […] We imagine for others that it will take years or even decades.”
The latter notably asks the Minister of Health, Christian Dubé, to “go towards common sense”.
Mr. Lavoie also deplores the slow pace of prevention and awareness campaigns for these genetic diseases among the population.
“In Saguenay–Lac-Saint-Jean, there are approximately 274,000 inhabitants and there are 300,000 people from our region, with parents or grandparents from here, who are outside the region. These people are at risk. It’s very difficult to reach them because we can’t advertise on it,” he warned on our airwaves.
See his full interview in the Noovo Info 17 newsletter.
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