Most of the time, people with ALS are given two to five years to live
Albertans who have ALS, also known as Lou Gehrig’s disease, now have a new treatment option that could improve their quality of life and help them live longer. The Alberta government will pay the estimated $18,500 a month per patient for this treatment.
On August 1, the province added the brand-name drug Albrioza to the Alberta Drug Benefit List. This means that eligible patients can get the cost of the treatment covered by the province.
The drug is now covered by the government in Ontario, Quebec, British Columbia, and New Brunswick, as well as in Alberta.
It’s been more than a year since Health Canada gave the drug a conditional green light in June 2022.
Leslie Ring-Adams, the head of the ALS Society of Alberta, said that the timeline for people with the disease, for which there is no known cure, has been too long.
“Our families don’t have the luxury of time,” said Ring-Adams in an interview.”The regulatory process needs to move more quickly.”
People with ALS, or amyotrophic lateral sclerosis, slowly lose nerve cells in the brain and spinal cord. About two to five years after the first signs of the disease, people with ALS die.
On its website, Alberta Health says that the first signs of ALS are weakness in a leg, hand, or face, or having trouble talking or swallowing.
As motor neurons slowly die, ALS makes muscles twitch, makes it hard to use hands and fingers, and makes it hard to talk, swallow, eat, walk, and breathe.
Clinical trial
Dr. Theodore Mobach is a neurologist and the director of the ALS clinic in Calgary. He said that trials show that Albrioza helps slow the death of motor neuron cells.
He said that it’s hard to tell how well a drug is working for a single person, but that the group of patients is giving them an idea of how well the drug works.
In 2020, a clinical trial was done by the American company Amylyx Pharmaceuticals, which makes Albrioza.
“Based on that trial, the people who took Albriosa got better slower than the people who took a fake drug,” Mobach said.
“It’s a small but likely clinically and statistically important benefit.”
After two phases of testing, Health Canada gave the drug the green light. Mobach said that the national health agency usually goes through three steps with a drug.
The first step is to show that it’s safe. The second step is to show that it’s starting to work. The third step is to show again that it works and that it’s not just a coincidence.
Mobach said that Health Canada conditionally approved the drug based on the phase two trial because there is no cure for ALS and it has such a big effect on patients.
Riluzole and Edaravone are two other main drugs that are used to treat ALS.
Mobach said that a phase-three trial is already under way. Its goal is to find out more about how well the medicine works and if it works the same way in different trials and studies.
“It works because I’m here.
Ralph Scott has been taking the drug for 14 months. He lives in Calgary and was diagnosed with ALS in November 2021.
The 65-year-old man said last week, “It’s working because I’m here.”
After going to an ALS seminar in Calgary last year, the former truck driver was able to get the drug for free from the company.
Mobach said that Amylyx had been giving the drug to some patients as a “compassionate supply” while it worked with the pan-Canadian Pharmaceutical Alliance (pCPA) to get the drug covered by federal, provincial, and territorial public drug plans.
Scott takes both the powder and the drug Edaravone twice a day.
Scott said, “I’m a great example of someone who lives with ALS instead of sitting in a dark room waiting to die.” “We need the chance to live with ALS and stay alive.”
He’s glad that the expensive drug will now be paid for and that his wife won’t have to worry about money when he dies.
Mobach thinks that between 50 and 100 of the 400 to 500 people in Alberta who live with ALS are taking the medicine. Scott is one of them.
The province’s drug benefit list says that Alberta Blue Cross will cover patients who have had ALS symptoms for 18 months or less and don’t need to be on ventilation.
Coverage is given for six months with a special authorization and a prescription from a neurologist.