The Risks of Medical Tourism for ALS Treatments: Exploiting Desperation for Profit

Amyotrophic lateral sclerosis (ALS) is a progressive neurological disease characterized by the degeneration of motor neurons in the brain and spinal cord. This deterioration impairs muscle control, leading to weakness, difficulty speaking, swallowing issues, and eventually respiratory failure, often culminating in death within a few years of diagnosis. The incidence of ALS varies globally, with approximately two in 100,000 people diagnosed annually in Canada, totaling around 1,000 new cases each year. In British Columbia, the rate is slightly higher at about three per 100,000, resulting in roughly 190 new cases annually. At any given time, about 4,000 Canadians and 400 residents of BC are living with this disease.

Despite extensive research efforts worldwide, developing effective treatments for ALS remains challenging. Currently, only a few drugs—riluzole, edaravone, and more recently tofersen—have been approved by regulatory agencies like Health Canada and the FDA. These medications offer modest benefits and are the only officially sanctioned pharmacological options available. Until now, treatments in Canada have been limited, but ongoing research into gene therapies and other innovative approaches hold promise for future breakthroughs.

However, progress in finding cures has been slow, with over 95% of clinical trials in recent decades failing to produce successful outcomes. This has fostered a sense of hope among patients and their families, creating a desire to explore unproven treatments. Unfortunately, this vulnerability has led to the rise of medical tourism—patients traveling abroad or within regions to seek treatments that lack scientific validation or regulatory approval.

One concerning example involves a patient named Geoff Sando, who traveled to a clinic in Moose Jaw, Saskatchewan, to pursue an unproven intervention for ALS highlighted in a CBC report. The ALS Society of Saskatchewan and local political groups have raised alarms, labeling such clinics as exploitative and dangerous. These clinics often promise cures or dramatic improvements but lack credible scientific backing, preying on the desperation of individuals facing a devastating prognosis.

Medical tourism for conditions like cancer, stroke, and orthopedic issues has been around for decades, and now the trend is extending to more severe neurological diseases like ALS. Treatments involving stem cells and other unregulated procedures are marketed aggressively in the US and Mexico, often without sufficient evidence of safety or efficacy. Recently, similar offerings have appeared in Canada, prompting regulatory scrutiny and concerns about consumer protection.

Patients considering alternative or experimental treatments should exercise caution and consult healthcare professionals and reputable organizations such as ALS Canada or BC's ALS Society. While the pursuit of hope is understandable, it is crucial to avoid interventions that can cause harm, deplete financial resources, or delay access to proven therapies.

The development of ALS treatments has been painstakingly slow, with over 95% of clinical trials failing over the past 28 years. Currently, only three drugs—riluzole, edaravone, and tofersen—are approved for use in Canada and the US, with Tofersen being the first gene therapy approved for hereditary ALS due to SOD1 gene mutations. These therapies provide only limited relief, emphasizing the urgent need for continued research and innovation.

Looking ahead, Canadian public trust in science and researchers remains relatively high, but the proliferation of unproven treatments risks undermining this confidence. Protecting vulnerable patients from false hope and exploitation requires strict regulation and ongoing education. Addressing the challenges posed by disinformation and ensuring access to safe, effective therapies are vital steps toward a future where ALS can be truly conquered.