Summer 2014: A time for family fun, sun-tanning on the beach, and dumping buckets of ice water over your friend’s head. Nothing too out of the ordinary, except the last one spurred a deluge of Facebook posts and YouTube videos. The ALS Ice Bucket Challenge captured the hearts of young and old alike, spreading awareness for the debilitating motor disease, and raising over $94 million during the course of the summer.
To fully appreciate the significance of this campaign, let’s go back to that formulaic question all professors ask their students to consider when they explain a thesis: What is ALS, and why do we care?
According to the ALS Association, amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, is a neurodegenerative disorder that results in loss of motor control, for which there is no cure. The patient’s condition progressively worsens until he or she reaches a state of paralysis, often leading to death in just two to five years after diagnosis.
5,600 new cases of ALS appear in the U.S. every year, a minuscule amount in comparison to the nearly 240,000 new cases per year of prostate cancer, the most common form of cancer. However, recent ALS Ice Bucket campaign donations have increased by a staggering 3,500% compared to this time last year, testifying to its widespread success.
Dr. Jason Weber, a founding member of the ICCE Institute (Integrating Communication within the Cancer Environment) at Washington University in St. Louis, observed that the ALS Ice bucket challenge underlined an interesting dichotomy between prevalence of a disease and level of monetary support. “I think it’s important that people realize that without the type of non-government funded entity like the ALS society to raise that awareness, you’re not going to get the type of money from the government, like say for breast cancer. There aren’t 220,000 new cases of ALS each year, so you have to raise awareness where you can,” stated Dr. Weber.
The success of the ALS Ice Bucket Challenge is not wholly unprecedented. Breast cancer is another example of a cause that has seen a great amount of support in fundraising over the years. It receives the most funding per new case out of all the major cancers. However, lung cancer, the most deadly cancer in the country, is currently underfunded, and so is prostate cancer. What has made awareness campaigns for ALS and breast cancer so successful?
Dr. Weber pointed out that breast cancer awareness has reached such high levels of success that it has essentially laid claim on an entire month and color. Taking a look at the demographic of breast cancer patients, it is easy to see why their cause might be a more favorable one to donate to – a large portion of the afflicted are women, many of them mothers to young children. Their appeal is strong, and their personal stories effective.
In terms of the differential in funding, Dr. Weber noted, “With the NIH, it’s all political. It’s the squeaky wheel that gets the most money. But there’s a lot of data that they use to back that up. More cases per year on this, in need of new treatments, this is affecting a huge population of Americans that are in the prime of their lives… those sorts of things can ring true with politicians, and you can get them to push for that kind of money.”
However, lung cancer faces additional obstacles of its own. Many equate donating to this condition with promoting unhealthy habits like smoking. “Lung cancer has its own stigma of, well here are individuals who are getting cancer because they smoke. I mean, we know it’s not all about smokers. Some of the worst cancers are from non-smokers. But to be lumped together makes it that much harder to say, ‘Hey, please donate to me versus them,’” Dr. Weber said. Despite the high prevalence of the disease, lung cancer receives the least funding from the National Cancer Institute on a per-death basis.
What are we to do for those that suffer silently from a disease stigmatized by cultural preconceptions? Perhaps they could use ice buckets of their own, and just maybe, the stigma that coats these conditions can be gradually sloughed off. Dr. Weber believes the idea behind the popular ALS campaign can be applied to other diseases. “It just depends on who’s running the show in terms of having a background in multimedia, social media, to get the word out in a new kind of way,” he said.
As for the substantial amount of money that these ice buckets raised for ALS, the ALS association has stated that a large portion of the funds will go towards services and programs, and the remaining portion towards research. “We’ll see how that translates into the research that’s going on now,” said Dr. Weber. “Down the line, what kind of trickle-down are you going to get from this campaign? I think we’re all eagerly waiting to see how that works out.”