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Do you remember the viral ice bucket challenge in the summer of 2014? The challenge videos of people getting ice water dumped on their heads were viewed 10 billion times and raised over $100 million.
Here’s a harder question: Do you remember what the money was for? Most people do not. But, like this movie, the ice bucket challenge was one step toward finding some hope in an “unforgiving and relentless” disease.
The seven most terrifying words anyone can hear from a doctor are, “Have you ever heard of Lou Gehrig?” No healthcare provider wants to talk to you about the scoring record of the New York Yankee known as “The Iron Horse.” They want to prepare you for a diagnosis of ALS (Amyotrophic Lateral Sclerosis), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It is 100 percent fatal, usually within 2-5 years of failing systems that affect every aspect of motion, including speaking and breathing.
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 at 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.” He 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.
The movie opens with Wallach joyously racing into Lake Michigan. Then, we see him a few years later on the same beach, using a walker. The movie does not let us look away from the ravages of the disease, but his dedication to improving the lives and prospects of people with ALS brims with generosity and optimism. By working with others, those with ALS, and their families, he can get Congress to double the funding for research and then double it again, resulting in the first-ever breakthrough, the discovery of a gene connected to one form of the disease. As one of the doctors explains, anything we learn about nerves helps us understand all nerve-related diseases, including Parkinson’s and Huntington’s.
Former football star Steve Gleason, whose own documentary about his ALS experience is called “Gleason,” vowed to advocate but never testify before Congress or promote legislation. Wallach persuades him. Legendary Washington DC lobbyist Dan Tate, also diagnosed with ALS, turned Wallach down more than once. But then, he says in one of the film’s tenderest moments, Tate says he agreed to help Wallach because he wanted his children to see him fight. Wallach works to speed up Social Security disability payments and give people with ALS access to promising experimental medication.
The best anyone hopes for now is a sort of relay race of drugs that will keep people with ALS alive long enough to get to better ones. Some day, some very smart people will find a way to make the disease chronic or even find a cure or a way to prevent it. And that will be because of Wallach and Abrevaya, and the people they brought together.
On Prime now.
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