Accepting the #IceBucketChallenge as Someone Who Worked on ALS in Public Health

Friday, August 22, 2014

When people say it's a small world, they're sure as hell not kidding.

Before I left the U.S. to work in South Korea, I worked on a federally-funded ALS Surveillance Project for the state of Texas. I was employed by a federal contractor and assigned to work as an ALS Surveillance Specialist at the Texas health department. The project, which collect ALS data in designated states and metropolitan areas, is designed to strengthen efforts to build and evaluate the national ALS Registry currently being built by ATSDR, a federal health agency under the US Department of Health and Human Services that works closely with CDC. The three state-based projects have wrapped up, but the metro area projects are ongoing. ATSDR published its first paper related to the national registry last month.

Naturally, I learned a lot about ALS in the two years that I coordinated the project. I built relationships with stakeholders such as local ALS Association chapters (which merged to form one Texas chapter in 2012) and worked closely with specialised ALS treatment centers in Dallas, Houston, and San Antonio. I read a great deal about the clinical presentation, common treatments, and ethical considerations in treating patients and counseling caregivers. I visited with neurologists about the disease at conferences as we tried to get the word out about the project. I followed news, kept up with developments in research, and listened to academics and health professionals debate at meetings, often clashing verbally.

I lived and breathed ALS for two years. Similar to my colleagues on the Texas project team or in other states, however, I found that, aside from ALS advocates and healthcare professionals that were dedicated to treating neurological disorders, nobody seemed to know what it was.
"So where are you working?"
"I've taken a position at the health department."
"Oh, that's great! What do you do there?"
"I'm working on an ALS project for the state of Texas."
"ALS? What's that?"
After getting a few puzzled stares, I eventually started including a description of the disease with my job description. A few more people were familiar with it when you described it as "Lou Gehrig's disease," and sometimes I would get a "Oh yeah, I have an aunt who died from that." Occasionally I had the chance to explain how registries and epidemiological studies can be really helpful in understanding the causes of disease (it is still unclear what exactly causes ALS, and there is a genetic component in only about 5-10% of cases), but for the most part people's eyes just kind of glazed over before we went back to talking about football or how the Texas summer is so damn hot.

Which is why, at least to me, the "Ice Bucket Challenge" that has gone viral this week is such a positive thing. Many people have openly admitted to not knowing what ALS was until they took the challenge (some remain clueless, but for the most part I have seen that people who took it on have educated themselves). I have seen a lot of complaints that it is just another form of "clicktivism," and many have compared it to Kony 2012 or the use of the Arabic letter "nun" as a Facebook profile picture to draw attention to the persecution of Christians in the Middle East, but I disagree. "Making a difference" in the Great Lakes region of central Africa or the Middle East is difficult, given the complexity of the geopolitics in those areas. But ALS is different - it's an established neurological disorder with a defined epidemiology, unknown etiology and no effective cure or treatment. The way to address it is to raise awareness and fund research, and the fundraising power of this campaign speaks for itself: as of today, $53.3 million has been raised for the ALS Association.

After the challenge started making news headlines, I began to watch it with some interest, thinking back to the project that I worked on. Before I knew it, the challenge had entered both my professional and personal circles: several of my colleagues that worked on one of the other state projects, plus several expats that I knew in Korea, had been challenged - and soon I was challenged.

The current temperature in Austin, Texas is a blistering 97 degrees Fahrenheit (36 degrees Celsius). I accept.

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