(Montreal) People with amyotrophic lateral sclerosis (ALS) may benefit from additional treatment to slow disease progression. A new drug that could save them some time.

The National Institute of Excellence in Health and Social Services (INESSS) recommends under certain conditions that the drug Albrioza be paid for by the public drug insurance plan.

In a new notice published Friday, INESSS recommends that the Minister of Health include Albrioza on the list of exceptional drugs provided that its “manufacturer contributes to reducing the economic burden on the health system”.

This drug is marketed by the American pharmaceutical company Amylyx.

According to the information contained in the institute’s report, it is estimated that treatment with Albrioza during the first three years of the disease would cost the public system 134.7 million more to treat 476 patients.

Last June, INESSS recommended refusing registration of the drug due to doubts about its effectiveness. Additional studies, however, have reassured the experts. This time around, the institute believes that “Albrioza, taken for 6 months, slows the loss of physical functions (e.g., 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 could possibly extend the life of patients by about five months, indicates INESSS. In addition, the scientific committee considered the cost of treatment to be high. The cost-effectiveness ratio would also be “unfavorable” compared to the other two drugs available on the market, we can read.

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. Patients must also enjoy a certain autonomy and not have undergone a tracheotomy.

It is added that the authorization for treatment must not exceed a maximum of six months. A request for continuation of treatment could then be filed, always demonstrating that the patient has not undergone a tracheotomy, insists the scientific committee.

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.

This drug is consumed in the form of a powder that is mixed in a glass of water.

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 would rarely exceed five years from the appearance of the first symptoms.

Although this disease is still incurable, there are treatments to improve the condition of patients. Riluzole would prolong life by a few months while edaravone (or Radicava) would slightly slow the progression of the disease.