The ALS wave has finished sweeping the nation, resulting in a flood of over $100 million raised to fight a devastating disease which is actually quite rare. Now that gallons of ice water have drenched American’s bikinis and trunks, we should be asking ourselves two questions. First, does everyone really understand more about the disease now that the challenge is over? Second, and more importantly, what lessons can we learn from this incredible success?
There are two main reasons the ice bucket challenge turned into a nationwide phenomenon: It required an active Facebook account and no knowledge of how the disease actually works. Whether it was the appeal of posting a video of oneself squealing under frigid water or tagging family members, friends and colleagues to do the same, it worked. And very well for that matter. While the challenge was well-intentioned, looking back, it would have made sense to include similar diseases in order to expand the population who could relate. Perhaps it should have touched the full spectrum of motor neuron diseases involving primary lateral sclerosis or pseudobulbar palsy, diseases equally uncommon as ALS. It could have ventured into the muscular dystrophy category and include Becker and Duchenne. Some diseases like multiple sclerosis commonly affect motor and sensory function.
The fact of the matter is that most participants in the challenge will never really understand the intractable nature of this disease, even long after the money they donated is put into research for treatments that can as yet only slow the disease’s inevitable progress. At best, a cure is a long way off in the future.
For now though, maybe we can apply lessons learned from a fundraiser for a very rare disease to more prevalent diseases that we know how to treat or prevent. Cardiovascular disease, type 2 diabetes and lung cancer are illnesses that can use more than a one-time donation to their respective funds. Additionally, these diseases are ubiquitous and represent a large portion of premature mortality. Generating more publicity for their prevention and research addresses common causes such as high blood pressure, poor insulin sensitivity and cigarette smoking. Whereas in ALS, we can currently do little besides support patients, in these more common killers, we can actually address the underlying causes.
Imagine tsunamis number 2, 3 or even 4 that could pool in millions or even billions of dollars to help every inhabitant of our planet either stabilize their blood pressure, enforce healthy exercise and eating habits, or even make it “cool” to finally quit smoking. The ALS challenge has shown how social media can allure millions with two minute videos so let’s now look for the next great viral video wave that could help millions of people worldwide to live better quality lives through disease prevention and management. What if we applied the lessons learned from the ice bucket challenge to more common diseases that respond to lifestyle changes? This kind of tsunami can only benefit society.
Uruj Kamal is a psychiatry resident and can be reached on Twitter @UrujKamal.