Despite the COVID-19 pandemic, ALS patient care and research carries on at The Neuro with drug trials, a redesigned clinic, and a new approach for patients to maintain quality of life through mindfulness. Amyotrophic lateral sclerosis (ALS) affects about 3,000 Canadians. It is a neurodegenerative disease that is usually fatal within five years of diagnosis.
Although there is no drug to cure ALS or to slow its progression indefinitely, certain drug trials conducted at The Neuro hold promise. Over the past few years, the number of ALS drug trials at The Neuro has steadily increased.
“Biogen is soon going to publish the results of a treatment of a familial form of ALS that is the best we’ve ever seen in our trials,” says Dr. Angela Genge, head of The Neuro’s ALS clinic. “The drug is for the genetic form of ALS, which is seen in up to ten per cent of ALS cases.”
Several other drug trials are either underway or soon to start. This summer, The Neuro will begin trials of an oral version of a drug called Radicava (also known as edaravone), which was recently approved in its intravenous formulation in Canada and whose costs for Quebec patients are covered by the Régie de l’assurance maladie du Québec (RAMQ). Later this year, a trial with Cytokinetics will enter phase three, during which the hope is to prove definitively that the drug reldesemtiv, which eases muscle contractions with minimal nerve stimulation, has a significant effect on ALS patient’s function.
COVID and ALS care
The Neuro’s ALS clinic has remained open to patients throughout the COVID-19 pandemic. The Neuro is one of two Montreal-area hospitals that does not accept COVID patients, however, fear of catching the COVID virus led some ALS patients to prefer staying at home, which meant that fewer patients than usual were coming to the clinic.
To address the threat of COVID, they have rearranged the space to allow more physical distancing, more appointments are done by phone, and wait times have been reduced.
“We continue to see patients in clinic as needed,” says Dr. Genge. “ALS patients who come to The Neuro do not go into the in-patient area but come directly to the clinic. They don’t wait alone there but go straight into an examining room. All necessary precautions are taken against COVID infection so that patients can feel comfortable. We’re very concerned about patients staying home whose condition is getting worse.”
Dr. Genge notes that people with diabetes, heart disease, metabolic diseases or renal disease are at far higher risk from COVID-19 than ALS patients.
The Neuro is in the process of introducing a Langerian mindfulness approach to help ALS patients navigate change and maintain a viable quality of life. Langerian mindfulness was a method developed some 40 years ago by Dr. Ellen Langer, a psychologist at Harvard University. Mindfulness begins from the premise that the world is constantly changing, which applies to a progressive degenerative disease like ALS.
“For ALS patients, the need to readjust, grieve and reinvent oneself in the face of ongoing change is a constant,” notes Lana Kim McGeary, a spiritual aid counselor at the McGill University Health Centre who is spearheading The Neuro’s mindfulness project. “ALS patients face higher-than-normal episodes of grief for lost abilities, lifestyles, skill sets and social interaction.”
Mindfulness is defined as a process of actively making new distinctions about a situation and its environment, or its current context, as the situation changes over time. Mindfulness requires being actively engaged in the present and sensitive to both context and multiple perspectives.
“This project aims to develop a protocol for ALS and see whether increasing and maintaining mindfulness influences patients’ quality of life,” says McGeary. “Given that there is no ALS cure or long-term treatment, any skill set that helps maintain or improve quality of life could become a best-practice approach.”