If you have had a loved one with ALS, you have likely pored over numerous publications regarding the disease. As with cancer, there are many individuals—ranging from unqualified persons to scientists and doctors—who claim that cures for ALS exist. Some pharmaceutical companies have even gone so far as to show videos of patients exercising or even riding motorcycles after undergoing their "miracle" treatment—a treatment that, a decade later, has still not been validated by a Phase III clinical trial.
An article published in the journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration is titled "The connection between unproven stem cell-based interventions and complementary and alternative medicine in crowdfunding for Amyotrophic Lateral Sclerosis."
This article examines how patients with amyotrophic lateral sclerosis (ALS) use crowdfunding platforms (notably GoFundMe) to raise money for unproven medical treatments marketed directly to the public, while highlighting the link between these treatments and alternative medicine.
Researchers analyzed 247 English-language GoFundMe campaigns launched by ALS patients or their loved ones. They found that these campaigns collectively sought to raise over $16 million USD, primarily to fund stem cell-based interventions (SCBIs) whose efficacy has never been proven. A significant portion of the requested funds was intended not only for the interventions themselves but also to cover the cost of traveling abroad to the clinics offering them.
The study revealed a striking contrast between current scientific knowledge regarding stem cell therapies for ALS and patient beliefs. Although no clinical evidence has yet demonstrated the efficacy of these treatments sold directly to the public, the narratives in the crowdfunding campaigns reflected a high level of confidence. Campaign organizers frequently claimed that these treatments would:
Slow the aggressive progression of ALS. - Reverse existing symptoms.
Or even completely cure the disease.
The authors conclude that crowdfunding for these unproven interventions exposes ALS patients—and the donors supporting them—to significant financial risks, medical exploitation, and medical misinformation. As ALS is a rapidly progressive and currently incurable disease, patients and their families often find themselves in desperate situations, making them prime targets for clinics engaging in predatory practices.
The researchers argue that these findings highlight serious gaps in regulatory oversight and patient protection within markets for medical products marketed directly to the public. They call for stricter regulations to curb medical exploitation.