How one woman’s fight to create “everybody in” health care nearly killed her

Jul 19, 2018

By Thomas Fox Parry – TarBell.org

Donna Smith, a major force behind expanding the United State’s health care system, is hanging up her hat.

When Donna Smith and her husband, Larry Smith, got sick, Donna worked like hell to pay the medical bills. The work made her sicker, and the bills crushed them.

Their story was captured on the screen in Michael Moore’s “Sicko” and became an allegory of America’s health care dysfunction in the mid-2000s. Since the movie was released over a decade ago, Donna has worked to make herself part of the solution.

She became a leader, a force in what could be a gravity shift toward guaranteed, universal health care in the United States. With relentless heart, she’s traveled the country, sewing connections for the movement, and balancing the chaos of campaigns for groups like National Nurses United and Healthcare Now.

But Donna has to stop. Her health is bad, and the work could kill her.

I followed Donna around Denver one weekend in May, after she had decided to retire as executive director of the Progressive Democrats of America. I saw what it takes to be Donna, to be a citizen who effects change, to stand up to powerful corporations.

It’s a high bar. It requires stamina and sacrifice, guts, brains and heart. If we want to wrest democracy from big money, more of us will have to learn.

Stepping Up to Power

Donna and Larry picked me up in their forest green Chevy Malibu in a Motel 6 parking lot. We crisscrossed Denver, first to a downtown studio for Free Speech TV, then to a conference center on the edge of the city sprawl.

Donna was preparing for a visit by Tulsi Gabbard, U.S. representative for Hawaii’s 2nd congressional district and a friend. As Donna checked the studio’s teleprompter, scoped out a green room at the conference center, and made myriad stops between, she fielded a dozen calls and many more texts on a dizzying span of topics.

She also did everything from securing vegan snacks to juggling Gabbard’s photo ops. “You know what was good training for all of this?” Donna said. “Raising six kids!”

Throughout the day, Donna smiled and laughed. Occasionally she teared up as she traded jokes, handshakes and hugs with each person in her orbit.

People like Donna. The self-described “grandma from Chicago” is instantly warm, but sharp. She’s curious to know what you think. In turn, you want to listen to her.

Donna’s a connector, Tulsi Gabbard told me. Paul Song, president of the California chapter of Physicians for a National Health Program, said the same. So did Michael Lighty from National Nurses United, Katie Robbins from Campaign for New York Health, and many others.

Larry, on the other hand, is quiet. He talks, but primarily in dry one-liners. “I never know what he’s going to say,” Donna told me. “Every time we’re at a Q&A and his hand goes up, my career flashes before my eyes.”

He’s somewhere between Steven Wright and Felix Unger. After I landed in Denver, the first thing he said to me was: “I’m the Sherpa.”

Tall and slender and still in possession of a head of dark, combed-back hair at 73, Larry has had three bypass surgeries and several more procedures to treat coronary artery disease. He has back problems too. “I’m not a happy Sherpa,” he modified.

With Larry behind the wheel of the Malibu and Donna navigating, we sailed around the city. The Rockies stood like a wave suspended to the west. To the east, prairie dogs stood at their holes, watching the expanse. We made a stop at the golden-domed Denver Capitol.

Thousands of people in red T-shirts—teachers and their supporters—were out in the sun, covering the steps and a manicured park in front. They were rallying against state cuts to education. Donna and Larry went out of general solidarity and the specific desire to see their son, Dan, and his wife, Holly. Both are teachers.

The building is a familiar place of advocacy for Donna. When she was 25 years old, not long after escaping her first marriage, which was violent, she staged a one-woman protest on the Capitol steps to call for the enforcement of child support laws. She dressed her kids in shirts that read “Could you raise me on $30 a month?” The Denver Post covered her sit-in. The city’s district attorney called her to see what he could do.

Donna gets a charge out of walking right up to power. At the teachers’ protest, she spotted Colorado State Rep. Janet Buckner, and said, “I’ve gotta ask her something.” She slipped by a state trooper holding a cordon. We got across the fire lane and into another crowd swelling around the dais and mics, but we lost Buckner on the steps. Steps are a problem.

At 63 years old, Donna wears oxygen tubes and uses a walker.

From Bankruptcy to a Health Care Movement

After suffering weeks of what first seemed a heavy menstrual cycle in 1999, Donna discovered she had uterine cancer.

Doctors performed a hysterectomy and took out her ovaries, lymph nodes and a bit of her stomach. After almost four months of procedures, radiation and recovery, Donna went back to a job caring for disabled children in a group home. One night, she lifted a kid from a bed into a wheelchair and felt something inside her rip. Donna had herniated the incision point of her surgery. Surgeons installed a mesh in her gut to put her organs back in a place. The injury would come back to haunt.

By early 2003, Donna and Larry were living in Deadwood, South Dakota. She was working as a newspaper journalist (covering everything from then-Senator Tom Daschle to bake sales), and Larry had a job as a casino cashier. He had heart trouble, and Donna drove him across states for treatment, sleeping in the car to stay close. Donna’s insurance wasn’t great, and they couldn’t keep pace with out-of-pocket costs. Her cancer returned. Soon overwhelmed, they sold their house to pay off the debts and began eating out of food banks.

Then they declared bankruptcy. Flat broke, they returned to Colorado to live on a pull-out couch in their daughter’s basement office. Michael Moore filmed the move for “Sicko,” which explored the lunacy and cruelty of the U.S. health care system. Donna and Larry weren’t paid to appear in the film, but Donna turned the documentary into an opportunity to push for better health care for all Americans.

Donna is a badass, but she knew she couldn’t do it alone.

“She’s a compelling individual,” National Nurses United’s Lighty explained, “but she knew to root herself in organizations.”

As part of a movement, she became a force—and a leader in a yellow school bus proclaiming “Healthcare for All!” on the side.

With the backing of advocacy group Healthcare Now, Donna traveled the country in the heat of summer of 2007 on the “Sicko” road tour, screening the film and talking to audiences. Faith groups and unions got on board. The California Nurses Association organized “Scrubs for Sicko,” a drive to have doctors and nurses at each of the film’s 3,000 screenings. The screenings drew protests, including conservative college students dressed as “sexy” nurses in D.C. Once, the bus engine caught fire while wending through the Tennessee Appalachians, I’m told.

Donna spoke with patients, policy experts and medical professionals. She connected with activists. She did interviews and addressed crowds.

In July 2007, John Conyers, a Democratic U.S. representative from Michigan, invited Donna to testify before the House Judiciary Committee in a session on medical bankruptcy.

Sitting before the mic, her stomach twisted in knots. They allotted her five minutes.

Donna’s decade of frustration and fury over wrangling with insurers and bankrupting bill collectors wouldn’t fit in five minutes. She blasted the federal legislature for the better part of a half hour.

“I am so angry at you,” she told the committee in pain-hardened testimony. “I worked. I educated myself. I voted. I bought a home and then moved into a better home. I raised my children responsibly, and you left me broken and battered because you failed to act on health care reform.”

Donna collected her voice: “Just as I have come out of the shadows of economic ruin and shame, so, too, will others come forward to hold you accountable.”

She hung out for question-and-answer time. Alongside fellow testifier Elizabeth Warren, then a Harvard Law professor, Donna pushed for a Conyers bill proposing government-run health care and parried with congressmen on bankruptcy law, credit scores and infant mortality rates. To their skepticism on the economic feasibility of a health care system like Conyers was proposing, Donna said, “If we had to go strictly by the numbers, way back when we formed this nation, we never would have fought the War of Independence. We never would have fought to be in this room today.

“We believed there could be a better way to run government. And I am still going to implore all of you to please listen to the people who elected you and make this a better system for us. Thank you.”

Shortly after her appearance before the committee, Donna accepted positions organizing with Healthcare for All, the Progressive Democrats of America, and what became National Nurses United. She also kept writing. To date, she’s written more than 450 essays, columns, stories and blog posts for places like the Huffington Post, the Daily Kos, Common Dreams, The Hill and more.

From Donna’s point of view, she had little choice.

“To keep going, I had to take every opportunity [“Sicko”] opened to me,” she told me. “I wasn’t going to let our story fade away.”

Perhaps more importantly, Donna moved that story forward and transformed herself in the process.

“As a patient, you can wind up being a prop, there for the horror story but not the solution,” she said. “I can play the part, but I’ve made darned sure to be an advocate, to be as valuable as anyone else in the policy discussion.”

An “Everybody In” Health Care Vote

On August 10, 2008, after two flights and three hours of sleep, Donna the advocate showed up in downtown Pittsburgh.

The Democratic National Committee was building its election platform at the Westin Convention Center on the Allegheny River. Donna and an ally in the DNC platform committee, Bob Remer, met up with John Conyers to lean on the DNC higher-ups to get guaranteed universal health care—not “coverage”—into the guiding document.

As Donna recalls it, she and the health care crew worked the ballroom crowd and conference rooms for hours. They broke off the charm offensive after midnight, and in the morning met with Barack Obama surrogates and party execs in the bright, airy lobby for a final negotiation.

According to Donna and others present who spoke with me, the DNC negotiators asked Conyers, “What will you accept?”

Conyers turned to Donna and Bob.

“Guaranteed health care,” they said, “for every man, woman and child.”

“Everybody in. Nobody out,” Donna added.

Hours later the amended language went to a vote. It passed unanimously to a rousing cheer that sailed out of the convention center and into street.

To Donna’s memory, Conyers took her by the shoulder and said, “This is huge.”

Obama ran on universal health care, and through the 2010 Affordable Care Act, 20 million people have gained health coverage (if not always health care). But 28 million Americans remain uninsured, and 18,000 of them will die each year because of it, according to a recent study from the National Academy of Medicine. (That death toll is down from 45,000 in 2009, according to the same researchers.)

Many of those with insurance find that it’s too thin. According to the Commonwealth Fund, a century-old health research foundation, 41 million Americans remain “underinsured,” meaning their coverage is too scant for necessary treatment, or it doesn’t protect them from ruinous out-of-pocket costs. Of the approximately 800,000 personal bankruptcies declared each year in the U.S., most arise from medical debt.

Donna’s advocacy work was far from over.

Out of the Hospital, Into a Campaign

In early 2014, as the U.S. health care crisis persisted under the ACA, Donna and the Progressive Democrats of America helped to generate momentum for a Bernie Sanders presidential campaign. They wanted someone who would push hard for a single-payer system in which all health care, taxpayer funded, is managed through one government agency—like the U.S. Medicare program for people 65 and older and others who have end-stage renal disease has been for more than 50 years.

Just about a month before Sanders would declare his candidacy, Donna was unloading the dishwasher, on Saint Patrick’s Day 2015, in her Denver apartment, and an odd fluttering played in her stomach.

She clutched the counter and wondered whether she’d be able to put away the Tupperware. Then, suddenly drenched in sweat, she tried to call out, but couldn’t.

Frozen and fearing that this was death, Donna thought, “I haven’t told everyone I love them.”

That day, Donna suffered a massive gastrointestinal hemorrhage. Larry found her on the kitchen floor in a spread of blood.

Around the mesh in her stomach (that old hysterectomy wound repair) Donna had been bleeding for weeks. In the 15 years since the mesh’s installation, she had suffered two more bouts of cancer, and rather than rest, she had worked herself ragged.

Donna was hospitalized, and while there she contracted the drug-resistant staph infection known as MRSA through the IV port in her arm. The hospital removed the infected vein from wrist to shoulder, but her lungs had already crowded with infected blockages.

But as soon as Donna got out of the hospital, she got on the campaign trail for Sanders—now with a walker and oxygen. The candidate would win 13 million primary votes, all while laying out a “Medicare-for-all” plan to packed stadiums.

“Since the Sanders campaign, the demand for single-payer has grown tremendously,” says Michael Lighty. “It’s a sea change, a prairie fire.”

Two of our most populous states, California and New York, are in the lead. The New York Assembly has passed a universal health care bill and sent it to the state senate. In California, a similar bill reached that state’s assembly on a nearly two-to-one vote.

At present, 58 percent of Americans say that securing health coverage for everyone is the government’s responsibility, according to a poll from the Pew Research Center. Another poll from The Washington Post and the Kaiser Family Foundation reports that 51 percent of Americans favor single-payer, even when framed as a “national … single government plan.”

Conyers’ House bill, which he introduced for 15 years straight, has finally taken off, garnering 121 co-sponsors this session, a huge majority of the Democratic caucus.

On the Senate side, Bernie Sanders has introduced a Medicare-for-All bill that boasts 16 co-sponsors, including a Who’s Who of Democratic senators eyeing the White House. Despite the DNC’s own internal efforts to torpedo single-payer support, its next candidate for president will have a hard time touting anything short of universal Medicare.

A fundamental reorientation of what is possible—or expected—from our health care system has occurred despite the several billion dollars health insurers and pharmaceutical companies have spent lobbying in the opposite direction.

This shift has arisen in large part from the cruel and byzantine lunacy of our private health care system. If you’re sick and anything less than wealthy, it can be a nightmare. But the idea that a humane and effective alternative exists—and may be inevitable—is due to years of relentless work from Donna Smith and people like her.

Who Will “Shake the System” Next?

Donna’s retirement will leave a hole in this movement. Yet she holds hope that younger advocates will keep pushing.

She looks to people like Tulsi Gabbard. When the congresswoman visited Denver to speak in May, she told the crowd that, as a teenager paddling out on a surfboard, she’d find trash amid the waves in her home state. It prompted her to found the Healthy Hawaii Coalition, which connects environmental advocacy to improving community health in the state.

Donna, emcee for the event, closed out by saying, “I have to believe that someday soon, we’ll have a woman of such grace and intelligence as candidate for president.”

She cried while she said it. She cries often, perhaps half a dozen times in the two days I spent with her. But it’s not sadness. On the contrary, she seems to draw strength from it. Over years of illness, she’s become intimate with her own with fragility.

Ian Schiffer, a Fulbright Scholar who became close to Donna as he was organizing students, put it to me like this: “It’s Donna’s vulnerability that leads to her unquantifiable strengths. She’s taught me to be vulnerable, and it’s allowed me to grow.”

As the Gabbard event wrapped up, and audience members jockeyed for selfies with the rep, I asked Donna why she was crying.

We stepped out into the hall.

“Because I won’t get to do what I love anymore,” she said, wiping her eyes.

“But there are wonderful people out there, young people,” she continued.

I’m reminded of something else Schiffer said to me, that Donna had radical hope for the next generation.

“They’re going to shake the system,” Donna said. Schiffer is 23. Gabbard is 37. “All is not lost,” Donna added. “But my time with it is drawing to a close.”

2 Comments

  1. Boris Dirnbach

    Wow; I knew some of Donna’s background and know her from her passionate informed articles & leadership of PDA but didn’t know quite how personal this struggle is for her.
    Great article.

    Reply
  2. Stephen Spitz

    Thanks for writing this great article about a passionate advocate for guaranteed health care for all – Donna Smith.

    Reply

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