No Ordinary Documentary

By Robert Cook-Deegan

In 2017, Brian Wallach, a lawyer from Washington, DC, was told he had half a year to live after being diagnosed with amyotrophic lateral sclerosis, or ALS. It’s now six years and counting, much of it chronicled in No Ordinary Campaign, a compelling documentary about the nonprofit patient advocacy organization Wallach founded, I AM ALS.

ALS, known as motor neuron disease in the United Kingdom, is having some days in the sun, buoyed by viral celebrity videos of the Ice Bucket Challenge in 2014. The challenge raised over $100 million for the terminal disease and related neurodegenerative conditions, and helped unify various ALS constituencies and organizations into a potent political force.

All these efforts are amplified by the force of Wallach and his wife, Sandra Abrevaya, who met as staffers on the 2008 Obama campaign and stayed on the political scene post-Obama. As the couple prepared to bring their newborn daughter home from the hospital, Wallach learned that ALS probably explained the hand cramping and pen dropping he’d been experiencing. The dreadful diagnosis was then confirmed.

By the time they’re diagnosed, most ALS patients have only months or a few years to live. There are no cures and few effective treatments. Patients face diminishing capacity to talk, move, and perform the activities of daily living. Any delays in getting access to assistance and potential therapies mean they will come too late. Wallach and Abrevaya, who knew nothing about ALS before the diagnosis, dove into their Rolodexes and drew on their skills in organizing campaigns to make things happen.

No policy achievement can be attributed solely to a single organization or person, but the Wallach-Abrevaya duo had extensive networks in Washington. They applied their consummate political, organizational, and communications expertise to get policies changed for ALS patients and their caregivers.

They applied their consummate political, organizational, and communications expertise to get policies changed for ALS patients and their caregivers.

No Ordinary Campaign, released last year,is part of the communication strategy that lays out the human story in a way that print media cannot rival. The work paid off: among other successes, Wallach determinedly delivered his own pained, halting verbal testimony to the US House Appropriations Committee, which funds the National Institutes of Health (NIH), in 2019.

The political achievements chronicled in the film are remarkable: a doubling of the Department of Defense congressionally mandated medical research program devoted to ALS from $10 million to $20 million in 2022 and then to $40 million in 2023; authorization for $100 million to encourage earlier access to promising treatments through the NIH and Food and Drug Administration; and an increase in the NIH budget and focus, including a formal federal report that lays out strategic priorities for ALS and a call for proposals to expand access to clinical research. ALS has even entered the orbit of the brightest new star in the biomedical research constellation, mentioned explicitly in the 2022 rollout of the Advanced Research Projects Agency for Health, or ARPA-H.

The film tells a captivating story of how to convey urgency at the highest political levels, and so quickly change the world. It is hard, however, to really show a coherent chronology—how priorities were set, how cooperation with others in the ALS movement emerged, or how strategy drove political planning and communications. But that’s not the point; the nuts and bolts and assembly instructions are best left to another medium.

The film tells a captivating story of how to convey urgency at the highest political levels, and so quickly change the world.

For those who wish to follow all the policy balls bouncing on the floor—or to track the process of translating passion and political drive into change, the documentary needs a complement. Just in June, Gideon Lewis-Kraus profiled Wallach in the New Yorker, exploring whether accelerated access to unproven medicines would undermine efforts to show whether they work. The politics and strategy are more thoroughly laid out in long-form print accounts, for example by Sam Stein in Politico and Brian Barrett in Wired, and in this profile from National Public Radio.

One especially promising use of this and similar documentaries is to spread the word about how to build a movement and have an impact. To fill this gap, I AM ALS and the Chan Zuckerberg Initiative (which supported the film) have created an organizing playbook.

The documentary is currently on the film festival circuit. Its schedule and plans to make it widely available can be followed through the film’s website.