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A Time of Unprecedented Hope

In recent years, the ALS story has changed. It is no longer just about wheelchairs and medically-assisted dying. It now includes unprecedented hope given that:

• there are over 160 drug companies worldwide working in the ALS space.

• there are ~80 ALS clinical trials going on worldwide including several in their final stages.

• in September 2020, Amylyx Pharmaceuticals announced that its drug, AMX0035, slowed the progression of ALS in a clinically meaningful and statistically significant way in a Phase 2/3 trial.

• in November 2020, Brainstorm Cell Therapeutics announced that its stem cell therapy, NurOwn, produced positive results in a sub-group of ALS patients in a Phase 3 trial and also resulted in positive bio-marker data. One member of our group, who participated in the trial, believed it slowed down and even temporarily reversed his ALS progression. While the headlines read that NurOwn failed to reach statistical significance across the spectrum of ALS patients enrolled in the trial, the headlines fail to account for the heterogeneous nature of the disease and we are hopeful that the specific subgroup of positive responders can be identified and then people living with similar variants of ALS can access the therapy.

• there has been a breakthrough therapy in the fight against genetic ALS. Chris Snow, the Assistant General Manager for the Calgary Flames, publicly announced in December 2019 that he had been diagnosed with ALS in June 2019. Chris has a type of genetic ALS that affects 2 percent of ALS patients and that had already killed his father, two uncles and his 28-year-old cousin. The average life expectancy for this type of ALS is 6 to 18 months. Almost immediately after his diagnosis Chris enrolled in a Phase 3 clinical trial at Sunnybrook Health Sciences Centre in Toronto for those with his type of genetic ALS. The therapy, Tofersen by Biogen, is working in that Chris’ ALS progression has dramatically slowed since he has been in the trial. Read Chris’ story HERE.

• there are new, innovative clinical trial formats being initiated, e.g., the HEALEY ALS Platform Trial.

• there are new, bold, patient-led advocacy organizations demanding action, not just awareness, e.g. I AM ALS.

• there has been unprecedented legislative action in the US focused on ALS treatments and research.

The Canadian Reality, A Crisis of Hope 

The reality, however, is that this activity has been largely happening outside of Canada. Currently, nineteen percent of Canadians don’t even have ALS Clinics within their respective provinces and 22% don’t have access to clinical trials. Clinical Trials represent HOPE for those currently living with ALS as this is the primary method of accessing promising therapies today.

Further, the current Canadian drug approval process can take three or more years which is longer than the expected lifespan of an ALS patient. In other words, if a scientifically validated cure is made available in the US tomorrow, and a Canadian is diagnosed with ALS the following week, that Canadian may not survive to access the therapy. They will most certainly have to pay for it out of pocket or through private / employer insurance and if these options are not available, they will, in all probability, die before provincial coverage is made available.

The last Medication to be Approved in  Canada: Radicava (edaravone)

Radicava (edaravone) was approved in October 2018 by Health Canada.

However, it took until April 2020 for the pan-Canadian Pharmaceutical Alliance (pCPA) negotiation process for this drug to conclude. (The pCPA is an alliance of the provincial, territorial and federal governments that collaborates on a range of public drug plan initiatives),

Following the pCPA negotiation process each provincial government still then had to approve Radicava before it was covered through their respective provincial health care programs and available to all Canadians.

To date, eight provinces have approved edaravone (Radicava): Quebec (April 2020), Ontario (May), Alberta (June), Saskatchewan (June), Manitoba (June), New Brunswick (June), Nova Scotia (July) Manitoba (July) and BC (August). As such, it took ~18 months before Quebec approved this drug and ~22 months before BC approved it. These delays cannot be justified in relation to a disease like ALS.

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Hope is on the Horizon

Although an ALS diagnosis has been treated as a death sentence, new treatments that can stop and even reverse progression are in development. 

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