Amyotrophic lateral sclerosis (ALS) is a devastating neurological disorder of unknown cause, in which motor nerve cells of the brain and spinal cord that transmit signals to muscles progressively degenerate. This weakens limbs and affects speech, swallowing and ultimately the ability to breathe, resulting in death, typically within just a few years.<\/p>\n
Each year in Canada, approximately two people per 100,000 are diagnosed with ALS, amounting to about 1,000 cases based on the current population. In British Columbia, where we are located, the rate is estimated at just over three per 100,000 or roughly 190 new cases per year<\/a>. <\/p>\n This equates to approximately 4,000 Canadians<\/a> \u2014 and 400 British Columbians<\/a> \u2014 living with ALS at any given time.<\/p>\n Rigorous ALS research is underway locally, nationally and internationally to slow \u2014 and ideally reverse \u2014 the relentless progression of this disease. Significant advances in understanding the genetic and environmental drivers of ALS are providing genuine hope that motor neuron diseases will one day be defeated.<\/p>\n As experts in neurology and ethics, we are committed to delivering the best available health care and information throughout B.C. and across Canada. Trust in science and informed hope are essential to achieving the best possible outcomes and the longest possible trajectories in enjoying life when facing the overwhelming odds of ALS.<\/p>\n A disturbing case<\/p>\n In June, CBC\u2019s The National reported on the case of Geoff Sando<\/a>, a person living with ALS who pursued an unproven intervention for his condition. Sando travelled to Moose Jaw, Sask., to seek treatment at a clinic that claims to provide a cure for ALS. <\/p>\n<\/p>\n CBC\u2019s The National reports on a Saskatchewan clinic claiming to offer ALS treatments.<\/p>\n The ALS Society of Saskatchewan and the provincial New Democrat Party allege the clinic attended by Sando and several other patients<\/a> is a form of medical tourism \u2014 travelling elsewhere to seek treatment \u2014 that can prey on the most vulnerable in society: those whose quality of life is deteriorating, and whose futures are tragically cut short.<\/p>\n Medical tourism<\/a> for a wide variety of other health-related conditions is not new. For example, treatments for cancer<\/a>, strokes<\/a> and orthopedic conditions<\/a> have been available abroad for decades. <\/p>\n In the United States and Mexico, unfounded stem cell interventions for ALS have been advertised for years<\/a>. But until recently, it had been unusual to find such offerings in Canada. Their emergence speaks to the need for Health Canada to revisit its guidance on both regulated health and unregulated wellness products, including all forms of treatments, medications and device-based approaches<\/a>.<\/p>\n Read more: We understand the urgency and desire to pursue any thread of hope in the face of desperation, but claims of dramatic improvement or cures from ALS by unregulated clinics that seem too good to be true are likely just that. <\/p>\n Before investing in alternative treatments, we recommend that patients conduct their due diligence by consulting with their health-care team and their provincial ALS society for guidance. Ineffective interventions can jeopardize not only recipients, but also caregivers, especially when financial resources are drained.<\/p>\n Trusted sources<\/p>\n Developing approved therapies for ALS has been painfully slow, as evidenced by the failure of more than 95 per cent of ALS clinical trials in the past 28 years<\/a>. Only three drugs \u2014 riluzole<\/a>, edaravone<\/a> and tofersen<\/a> \u2014 have been approved by Health Canada and the U.S. Food and Drug Administration.<\/p>\n Although riluzole and edaravone are only modestly effective, they remain the only widely approved pharmacological options for all forms of ALS. Tofersen is the first gene therapy<\/a> recently approved to treat hereditary ALS caused by SOD1 gene abnormalities<\/a>. Other treatments are being evaluated worldwide<\/a>.<\/p>\n This marks only the beginning of such treatment approaches to not only hereditary ALS but also non-hereditary ALS, which makes up about 90 per cent of all cases.<\/p>\n Read more: For those affected by ALS and their families, ample resources are provided by various organizations, including ALS Canada<\/a> and related provincial organizations, including the ALS Society of BC<\/a>.<\/p>\n Future hope<\/p>\n
\n Giving patients the ‘right to try’ experimental drugs is a political maneuver, not a lifesaver<\/a><\/p>\n
\n A promising new study could lead to a reduction in symptoms of amyotrophic lateral sclerosis (ALS)<\/a><\/p>\n