As a doctor says in the documentary “For Life and Love: No Ordinary Campaign,” even in the case of the other most devastating diagnoses, there is still a chance to delay or reduce the effects of the disease. If pancreatic cancer has a one percent survival rate, that is still enough to give patients and their families a sliver of hope. That is not the case with ALS, or at least it has not been the case until Brian Wallach, whose doctor asked him about Gehrig when he was just 37, then said, “We can’t help you. Go home and live your life, travel, eat whatever you want, and get your affairs in order.” Wallach got the diagnosis just as his wife and second baby were coming home from the hospital.
The film is produced by Katie Couric and “Everybody Loves Raymond” showrunner Phil Rosenthal, and it has the rhythms of an extended but very professional news segment. Wallach and his wife, Sandra Abrevaya, are immensely appealing, attractive, devoted, optimistic, and dedicated. One patient doing better than anyone who has ever had the disease acknowledges that if he saw that happen to someone else, he would be envious. But, he tells us, Wallach “holds those victories up like they’re his own.” We meet other people with ALS and their families, and families who lost parents to the disease, as well as doctors, elected officials, and a few familiar faces. The film carefully balances the most painful moments with glimmers of progress and hope and makes a powerful argument for looking at struggles so easily ignored.
Wallach, described by a family member as “exhaustingly exuberant” and “always in 5th gear,” is a lawyer who spent most of his career working for the public interest. This included time as an assistant US Attorney, stints in Barack Obama’s Presidential campaign, where he met his Abrevaya, and in the office of the White House counsel. And so, his response to the devastating news was to see possibilities.
What frustrated him most was the invisibility of ALS patients. He talks about the problems people do not want to notice until they are confronted with them: poverty, racism, and the failures of the healthcare system. Even within the system, ALS has been dismissed as hopeless. Wallach envisioned a way to put people with ALS and their caregivers and families in the center of a patient-focused project to think of it as only temporarily hopeless. That begins with being not just visible but unignorable. His goals are to get funding, visibility, and access to medication and disability funding for people with ALS.