2023-07-06 18:57:57
(Montreal) Hope is not in vain and patients with amyotrophic lateral sclerosis (ALS) now have a new light to hold on to, perhaps to buy some time.
Posted July 6
Ugo Giguere The Canadian Press
About three months following the recommendation of the National Institute of Excellence in Health and Social Services (INESSS), last March, Quebec confirms the immediate addition of the drug Albrioza to the list of treatments available for patients with ALS .
The office of the Minister of Health, Christian Dubé, made the announcement Thursday morning by means of a press release. Albrioza is therefore officially on the list of exceptional medications and may be covered by the Régie de l’assurance maladie du Québec (RAMQ).
In a quote attributed to the Minister, he acknowledges that “the situation is very difficult” for people who suffer from this neurodegenerative disease. He adds that he takes the support of these patients to heart.
According to the INESSS notice issued in March, it was recommended that Albrioza be added to the list of treatments available on the condition that its “manufacturer contributes to reducing the economic burden on the health system”, i.e. that is, he agrees to reduce the cost.
After checking with Minister Dubé’s office, it is confirmed that an agreement has been reached with the manufacturer, which now makes it possible to offer this new treatment. The drug is marketed by the American pharmaceutical company Amylyx.
Claudine Cook, executive director of ALS Quebec, which offers support to people with the disease and their loved ones, received the news as “a big message of hope” and “a step forward for the cause”. .
A few more months
During an initial assessment, in June 2022, INESSS had recommended refusing the registration of the drug due to doubts regarding its effectiveness. Additional studies subsequently reassured the experts.
Now, the institute estimates that “Albrioza, taken for 6 months, slows the loss of physical functions (eg, writing, speaking, walking) in people”.
However, it is cautioned that “the magnitude of this effect is considered to be modest”. In the longer term, the drug might possibly extend the life of patients by regarding five months, indicates INESSS.
Furthermore, INESSS suggests restricting access to this treatment to patients who have been diagnosed with ALS, also known as Lou Gehrig’s disease, for less than 18 months.
In an interview with The Canadian Press, the director of the amyotrophic lateral sclerosis clinic at the Montreal Neurological Institute-Hospital, Dr. Angela Genge, maintained that a gain of five or six months for patients who suffer from this disease dazzling, “it’s huge”.
“Every day, every week, every month is important for someone with ALS. These are more moments that they can experience with their family, ”adds Claudine Cook.
Three drugs are available on the market to slow the progression of the disease, namely riluzole, edaravone (or Radicava) and now Albrioza.
Albrioza is a combination of two drugs, sodium phenylbutyrate (PB) and ursodoxicoltaurine (TURSO). We do not know precisely its mechanism of action, concedes INESSS, but it would have the effect of reducing the death of neuronal cells.
ALS is a relatively rare disease that attacks the nerve cells responsible for muscle movement. As it progresses, it leads to paralysis of the body, even affecting the ability to speak, eat and breathe. Life expectancy rarely exceeds five years from the appearance of the first symptoms.
For Dr. Genge, all that matters for these patients is buying time in the hope that research will progress and find new ways to curb the disease.
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