Editor’s Note: This story appeared in the April/May 2022 issue of Brain & Life. Health activist Ady Barkan died on November 1, 2023.

When actor Bradley Whitford first met activist Ady Barkan at a 2018 immigration rally, he saw a kindred spirit. “He believes, as I do, that politics should be a tool for applying your moral vision to the world,” says Whitford, who had been impressed with Barkan's idealism and pragmatic skills as an organizer even before meeting him in person. Today, “Ady has become a meaningful figure in my life,” says the actor, best known for his Emmy-winning role of presidential adviser Josh Lyman on The West Wing.

Whitford respects Barkan for more than just his activism. In 2016, at the age of 32, Barkan was diagnosed with amyotrophic lateral sclerosis (ALS), a terminal neurodegenerative condition, and told he could expect to live three or four more years. Now confined to a wheelchair and severely paralyzed, Barkan has survived longer than his initial prognosis thanks to aggressive management of his symptoms and 24-hour home care. But he's done much more than just survive. “Ady's response to his own suffering is to try to alleviate it in others,” says Whitford.

Barkan has become a leading figure in the Medicare for All movement and addressed the Democratic National Convention in 2020. He founded a political action committee (PAC) called Be a Hero after a video went viral of Barkan confronting then United States senator Jeff Flake on an airplane in 2017, challenging him to “be an American hero” and oppose a tax bill Barkan believed would lead to cuts in health care. As Whitford says, “Barkan has found a way not only to transcend his illness but to find some meaning in it.”

Before his diagnosis, Barkan considered himself the “luckiest and happiest person.” He was living in Santa Barbara, CA, with his wife, Rachael King, and their newborn son, Carl, and organizing for social justice causes, including immigrants' rights and police reform. His initial symptoms were odd but minor. “My left arm started to grow weak,” Barkan says. “I thought I had carpal tunnel, or that the weakness was a result of holding our baby so much. I never imagined that it could be something as insidious as ALS.”

Caused by a degeneration of motor neurons, ALS initially triggers weakness and fatigue. “The condition is diagnosed by a combination of medical history, neurologic examination, and an electromyography test, which monitors the response of muscles to nerve stimulation,” says Merit E. Cudkowicz, MD, director of the Sean M. Healey & AMG Center for ALS and chief of neurology at Massachusetts General Hospital in Boston. “In addition, patients may undergo MRI scans and blood work to rule out other possible causes.”

The US Centers for Disease Control and Prevention estimate that between 12,000 and 15,000 Americans have ALS. The cause of the disease is not known; nonhereditary ALS, with no family history or risk factors, accounts for up to 95 percent of cases.

As the disease progresses, sometimes in just a few years, patients become paralyzed in the arms and legs. They stop being able to chew, swallow, or speak, and eventually can't breathe without a ventilator. “How do you react to that?” Barkan says of the devastating diagnosis. “The hand we were dealt demanded that Rachael not only be mom to our newborn and professor to her students at the University of California, Santa Barbara, but now caregiver to her husband.”

ALS is almost always fatal within one to five years, although famous exceptions include the British physicist Stephen Hawking and Brain & Life contributor Catherine Wolf, an experimental psychologist at IBM's Thomas J. Watson Research Center in Yorktown Heights, NY, who both lived for decades with the condition.

Receiving a diagnosis of a terminal disease can have psychological consequences. “Most commonly we see grief, and counseling can help with that,” says Richard S. Bedlack, MD, PhD, FAAN, professor of neurology at the Duke University School of Medicine in Durham, NC. “Sometimes we see depression or anxiety, and there are medications to alleviate that. Other times we see denial or even anger. Those are the most difficult reactions because they can cause patients to withdraw from the very resources that are most likely to help them.”

Barkan chose to fight—not only for his own life but for the lives of others. His journey is the subject of the documentary Not Going Quietly, which was executive produced by Whitford and released last year. The film shows Barkan on a nationwide road trip in advance of the 2018 midterm elections, advocating for health care reform to politicians and policymakers.

A New Reality

In the fight for his own life, Barkan underwent a tracheostomy. “I had a tube implanted in my windpipe so I could breathe long after my diaphragm would fail me,” he explains. The procedure means he cannot speak or eat solid food, but he can still communicate. He uses a technology that follows the movement of his eyes, the one part of his body he can still control, to type and say words.

“A tracheostomy and ventilator often provide years of good quality of life for patients,” says Catherine Lomen-Hoerth, MD, PhD, FAAN, a neurologist and director of the ALS Center at the University of California San Francisco Medical Center. Because Barkan chose that option, he has been around for family milestones, like Carl's first basketball practice. Like the other parents, Barkan watched expectantly as his son learned to dribble and shoot. But unlike the other parents, he was moved to tears—because, he says, “it was something I never thought I would be able to do.” He also didn't think he'd have another child, but he and his wife welcomed a daughter, Willow, in 2019.

Some people with ALS take medications approved by the US Food and Drug Administration (FDA) to slow disease progression, such as the oral agent riluzole (Rilutek) and edaravone (Radicava), an intravenous infusion. Dr. Lomen- Hoerth recommends seeking care at an ALS multidisciplinary clinic, which provides a coordinated program of medical treatment, rehabilitation, and psychological support. ALS patients are counseled about interventions such as ventilators for breathing support and feeding tubes for appropriate nutrition.

Barkan also has a team of caregivers at home around the clock. “They clean and monitor the tracheostomy, feed me, help me go to the bathroom, move various body parts and limbs throughout the day to make me more comfortable, and cover all the other demands of living with ALS,” he says. “Without home care, I would be in a nursing home, a quality of life I'm not sure I would be willing to tolerate.”

But the challenges of procuring and paying for that care motivated Barkan to join the fight for health care reform. “I knew our health care system was broken before my diagnosis, but having a serious illness clarified just how cruel our system really is,” says Barkan, who graduated from Yale Law School and clerked for a federal judge before becoming a full-time activist. “My insurance denied me a ventilator, stating that it was experimental, and then two weeks after that, they rejected access to an FDA-approved ALS drug. Even good health insurance, which I have does not cover the cost of the care I need to survive. Paying out of pocket would have left us bankrupt.” He had to sue his insurance company in federal court to secure coverage for 24-hour home care. He's also received assistance from “very generous friends.”

Barkan's Be a Hero PAC advocates for expanded health care coverage, including home- and community-based care and Medicare for All, and supports the Build Back Better Act, which would strengthen the Affordable Care Act, close the Medicaid coverage gap, and lower the cost of prescription drugs. “I believe in fully funding home- and community-based services,” he says. “Everyone deserves to live safely and with dignity, among people they love.”

A Lasting Impression

A documentary like Not Going Quietly may have seemed inevitable, given Barkan's media savvy and skills as an activist. Yet when director Nicholas Bruckman first approached him about it in early 2018, Barkan and his wife had reservations about allowing a camera crew into their home to capture their lives. “But we thought it would be a great memento for our children,” says Barkan, whom Politico has called “the most powerful activist in America.”

He approached Whitford when he was seeking funding for the film. “The moment Ady told me about the documentary, I said I wanted to do anything I could,” says Whitford. “The producers are friends of mine. I told them I would give whatever resources I could to get the film made.” Not Going Quietly premiered in March 2021 at the South by Southwest festival, where it won Special Jury Recognition for Humanity in Social Action and the Audience Award in the Documentary Feature Competition. It has aired on PBS and is now available on Amazon Prime.

Whitford and Barkan are proud of the documentary and its potential to raise awareness of ALS and of the need for health care reform. “The film eliminates the distance, the false perception, between the personal and the political,” says Whitford. “Ady is embodying the reality that our country doesn't have universal health care.”

Barkan hopes it sparks activism. “I want people to know that I've found great joy and meaning in the struggle for justice, even as ALS has paralyzed my body. Being part of a larger movement has given me purpose, a community, and the chance to nudge our society in the right direction. And I hope viewers get involved as a result.” Barkan also has published his autobiography, Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance (Atria Books, 2019).

“I am constantly amazed by people like Ady Barkan,” says Dr. Bedlack. “Although the disease weakens them on the outside, they appear to get even stronger on the inside. Their efforts are changing laws to create more options for other patients and will ultimately speed our development of ALS cures.”

As he looks ahead, Barkan thinks of his children. “I want Carl and Willow to know who I am. I want them to know that I love them, and I cherish the life they will live, and the world they will create for themselves,” he says. “I've tried to leave behind a multigenerational movement for justice born out of solidarity and community.”

Whitford is grateful that Barkan opted to have a tracheostomy and go on a ventilator. “I was so relieved Ady made the choice to go on living despite all the challenges. I feel his joy at being able to be here and continue to fight.”

Why Home Care Matters

“I get to live a beautiful and full life with my family and watch my kids grow up because of home care,” says Ady Barkan, 38, a political activist in Santa Barbara, CA, who was diagnosed with amyotrophic lateral sclerosis (ALS) in 2016. Without it, Barkan says, he would have to move to a nursing facility, where the attention and love he gets at home would be missing.

Home care can include nurses who monitor vital signs, assist with wound care and teach ostomy care, and help manage symptoms. It also might cover health aides to assist patients with feeding, dressing, bathing, and toileting. Ideally, home care includes therapists to evaluate speech, swallowing, breathing, walking, and how safe the home is. “It's all about improving quality of life, reducing hospitalizations, and extending life,” says Richard S. Bedlack, MD, PhD, FAAN, professor of neurology at the Duke University School of Medicine in Durham, NC.

Unfortunately, most insurance companies cover home care only for a short period of time—often just a couple of weeks, says Dr. Bedlack. Exceptions include the Department of Veterans Affairs, which covers it for veterans with ALS, and longterm care insurance. Most patients with ALS don't have long-term care because of the expensive premiums, and those who are already diagnosed are unlikely to be accepted. In certain states, Medicaid covers some home services. A further complication is that many patients are 65 or older and get their insurance through Medicare, which does not cover extensive home care.

While not as comprehensive as round-the-clock home care, assistance from ALS Association chapters can cover home visits and assessments to help with modifications such as ramps, lifts, and roll-in showers; visits from social workers and skilled nurses; equipment loans; assistive technology, such as tablets; communication devices, such as the eye-gaze typing technology that allows Barkan to “speak”; and transportation.

Most patients cannot afford to pay for home care out of pocket, as costs often exceed $10,000 per month. For those seeking assistance in paying for home care, there are two established methods for challenging private health insurance to expand coverage. One is to pursue an internal appeal (conducted by the insurance company); then, if necessary, the insurance company would conduct an external appeal, in which an independent review organization would assess the claim. Healthcare.gov offers advice for appealing private insurance coverage decisions. The other recourse is to sue, as Barkan did. He was successful, but even his additional coverage does not take care of all costs. Patients considering this option should meet with an attorney for an informational session that should be free of charge.

Progress in ALS Research

While a cure for amyotrophic lateral sclerosis (ALS) continues to elude researchers, studies on motor neuron degeneration and better tools to diagnose and assess disease progression are ongoing. Many of them are funded by the ALS Association, the Muscular Dystrophy Association, and other organizations.

“There are more studies than I've ever seen in my 21 years in the field,” says Richard S. Bedlack, MD, PhD, FAAN, professor of neurology at the Duke University School of Medicine in Durham, NC. “I am most excited about research that addresses potential causes of ALS, including genetics, toxins, and viruses.”

Dr. Bedlack is also intrigued by the very rare cases of patients who appear to have recovered from ALS. Currently, about 50 people with a confirmed ALS diagnosis have improved rather than deteriorated. “We call these cases ALS reversals,” he says. “If we can understand how and why these recoveries happen, we may be able to make them happen more often.”

The Healey ALS Platform trial, a major initiative across several research facilities to test the safety and effectiveness of several drugs simultaneously, has great potential, says Catherine Lomen-Hoerth, MD, PhD, FAAN, a neurologist and the director of the ALS Center at the University of California San Francisco Medical Center. “Participants are less likely to be randomized to the placebo group, and testing drugs at the same time allows research to move faster for evaluating potential therapies,” she says.

Gene therapy is also promising, says Merit E. Cudkowicz, MD, director of the Sean M. Healey & AMG Center for ALS and chief of neurology at Massachusetts General Hospital in Boston. “There are targeted gene therapies for people with the hereditary forms of ALS as well as for nonhereditary ALS to lower or increase proteins that may play a role in fueling the disease,” Dr. Cudkowicz says. “There are also two drugs— AMX0035, which targets pathways in motor neurons that lead to cell degeneration, and oral edaravone—under review at the US Food and Drug Administration.”

Another noteworthy advance is the Accelerating Access to Critical Therapies for ALS bill (ACT for ALS), which supports expanded access to experimental drugs and other therapies for people with ALS who are not eligible for clinical trials. “This amount of research activity is encouraging,” says Dr. Cudkowicz.

ALS Resources

• ALS Association: als.org; 800-782-4747
• American Brain Foundation: americanbrainfoundation.org; 866-770-7570
• Be a Hero: beaherofund.com
• Brain & Life Books: Navigating Life with Amyotrophic Lateral Sclerosis
• I Am ALS: iamals.org
• Les Turner ALS Foundation: lesturnerals.org; 847-679-3311
• Muscular Dystrophy Association: mda.org; 800-572-1717
• National Institute of Neurological Disorders and Stroke: ninds.nih.gov; 800-352-9424