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After Rhonda Robinson, who has epilepsy, lost her job, she couldn't get health insurance. Without medication, she's having more frequent seizures.

A face of the uninsured, a state of denial 

The powerful health care lobby opposes the public option. They don't know Rhonda Robinson. Or the 47 million other uninsured Americans.

Sunrise would come in an hour, fully open eyes not for a couple or three. Still, as folks trudged from their cars to the buses that would take them from the Triangle to Washington, D.C., on the morning of June 25 for a rally at the Capitol, they had a clear vision that they would help to bend the arc of history in a righteous direction.

"What do we want?" someone on the Raleigh bus began the ritual chant. "Health care!" was the response, delivered as if the answer were "Justice!" Then: "When do we want it?"

"Now!"

They were, in the words of Lynice Williams, head of North Carolina Fair Share and veteran of many a civil rights battle, "Freedom Riders for health care."

On the Durham bus, meanwhile, a sleepy Rhonda Robinson silently rehearsed the speech she'd written for the North Carolina town hall meeting scheduled for after the rally. She wondered if U.S. Sen. Kay Hagan, then on the fence regarding the "strong public insurance option" that Robinson and her fellow riders supported, would attend to hear it.

As it turned out, Hagan did come, and she did hear Robinson's story, albeit not in a way that anyone planned.

Within a week of meeting Robinson, Hagan announced her support for the "public option," giving it a major lift when it looked to be in trouble.

click to enlarge Nearly 10,000 people converged in Washington, D.C., last month to rally for health care reform. - PHOTO BY BOB GEARY
  • Photo by Bob Geary
  • Nearly 10,000 people converged in Washington, D.C., last month to rally for health care reform.

The caravan to Washington happened as Congress was beginning to debate the issue of universal health insurance and how to achieve it. This is a critical domestic policy objective for the Obama administration as it tries to rein in the skyrocketing medical costs that are eating away at the national economy. The battle is expected to continue through the summer, with the outcome still very uncertain.

The organizers, a coalition of more than 100 labor unions, social justice and community groups calling itself Health Care for America Now (HCAN), included many advocates of a single-payer, or national governmental health care system such as exists in most other industrialized nations, including Great Britain, France and Canada. In all of these countries, health care costs far less than in the U.S.

But President Barack Obama was leading in a different direction. He argues that the U.S. is too deeply committed to an employer-based system of private health insurance to simply rip it up and replace it with single-payer.

A proponent himself of single-payer when he was but an Illinois legislator, Obama now counsels that the way to achieve universal coverage is by reforming—or "building on"— the private insurance system while bolstering the public insurance sector. That sectior is now limited to Medicare for the aged and disabled, Medicaid for the poor and the V.A. for veterans.

Together, public and private insurance systems work well in Germany and Australia. Obama argues that the U.S, too, is capable of crafting a "uniquely American" hybrid that covers everyone and saves money, too.

Solidly behind Obama when he campaigned for the presidency on this hybrid health care platform, the HCAN groups resolved to again follow his lead, or try to, when Congress went to work.

As the buses rolled to Washington, HCAN's message about the incredibly complicated legislation starting to form in a half-dozen Senate and House committees had been reduced to one simple message: Whatever emerged, HCAN said, must contain the "strong public insurance option" that Obama proposed and the private insurers, in league with the Republicans, were trying to kill.

If they couldn't have single-payer, HCAN would insist on a "strong public option" as the next-best alternative. And they would fight for it, they pledged, even if Obama himself was tempted (as recent comments by White House Chief of Staff Rahm Emanuel hinted he could be) to accept a compromise that omitted it.

On the North Carolina buses, there was yet another reason to worry. Word from HCAN's lobbyists was that the state's newly elected Democratic senator, Kay Hagan, was unwilling to commit to the public option, fearing it could undermine the private insurers and destablilize a huge sector of the economy.

This gave the 200 traveling Tar Heels their particular focus: Get Hagan on board.

"I've got her picture on this milk carton!" cried Deidre Reid, a organizer from the Nashville-based Center for Community Change, who was shepherding the Raleigh bus. "She is MIA, and we are going to find her!"

"What about Burr?" someone shouted. Richard Burr is North Carolina's Republican senator.

"Burr has his own plan," Reid answered dismissively. Burr supports leaving health care to the private insurers while taxing health care benefits to help subsidize the uninsured.

But Hagan, Reid declared, "rode into office on the wings of progressivity, right behind Barack Obama. And now she's resisting all the good things we're trying to get done."

Maybe. But at the end of the day, the "lost" Hagan turned up in the flesh. Her Senate office under virtual siege by HCAN forces throughout the rally at the Capitol, Hagan put in an unscheduled and seemingly impromptu appearance at the North Carolina town hall meeting held at the nearby Mott Building, and owned by the Democratic Senatorial Campaign Committee.

She didn't sign on to the strong public option that day, which angered many of her listeners. But a week later, she did, giving key support to an HCAN-backed bill getting its final touches in the Senate Health, Education, Labor and Pensions Committee (HELP), on which Hagan sits.

Hagan's arrival at the town meeting was the second-most dramatic moment of the day. It came not long after the most dramatic moment, when Durham's Rhonda Robinson told the group that, though she has epilepsy, when she lost her job last year, she lost her health insurance—and, with it, her neurologist and vital medications.

In tears, her voice shaking with frustration, Robinson couldn't read the speech she'd written. "This is not a game to me," she struggled to say. "I have two kids, and I don't want them to find me dead in my bed."

When Robinson sat down, several of her Durham allies swept in to take her with them to Hagan's office. They met the senator in the lobby of the Dirksen Building as she headed for the elevator en route to the meeting they'd just left.

"Tell her your story," her friends urged Robinson.

And she did, calmly this time. "I'm a single mom, I have a pre-existing condition, Senator, and I'm one of the 47 million people who don't have health insurance," Robinson remembers saying to Hagan.

Hagan listened intently, Robinson says, gripping Robinson's arm. "That's exactly the people we want to help," Hagan said finally. "People like you. C'mon, let's go."

click to enlarge Click for larger image • After Rhonda Robinson, who has epilepsy, lost her job, she couldn't get health insurance. Without medication, she's having more frequent seizures. - PHOTO BY JEREMY M. LANGE

A week after the Washington trip, Robinson relaxes between her classes at N.C. Central University. At 44, she looks like her fellow students, who are half her age. She's working on a bachelor's degree in business administration, with a minor in political science. Her business plan is a nonprofit that helps at-risk kids. She wants to run for local office. She has a 24-year-old son, a 15-year-old daughter, and epilepsy.

Epilepsy is a hereditary disease, Robinson explains, one she didn't know she had (though two aunts had it) until she suffered a stroke at age 32. Her condition is known as cerebral heterotopia—a brain disorder that's caused by such stimuli as flashing lights or a bright movie in a dark theater—and can cause tremors, dizziness or, in extreme cases, seizures. A grand mal seizure can be fatal.

Fortunately, Robinson says, her episodes have always been marked beforehand by an aura,—a recognizable sense of "déjà vu" that warns her to lie down, relax and sleep if she can. Some people with epilepsy have such auras, neurologists have told her, but not all.

Unfortunately, though, the episodes have been happening more frequently, Robinson confides, perhaps because of the stress she feels without a job or insurance.

Robinson should be under a neurologist's care, but she isn't. She hasn't seen her neurologist in a year. Before, she was taking two prescribed medications, Neurontin and Keppra, which helped limit the severity of attacks. Now she's not, because they cost almost $800 a month and she can't afford them.

She did buy a month's supply toward the end of last year, she says, and stretched it out over three months. Since then, though, she's gone without.

Robinson's story is familiar except, that it is, to borrow Obama's term, uniquely American: In no other industrialized nation would a person's health be jeopardized because she's lost a job.

Until July 2008, Robinson worked for the N.C. Department of Health and Human Services, processing inspection reports in an office on the Dorothea Dix Hospital campus in Raleigh.

She was let go after she'd suffered an on-the-job injury two months earlier. While attempting to lift a heavy file box from under her desk, she tore the rotator cuff in her left shoulder and seriously damaged three discs in her spine. She needed surgery and intensive physical therapy. A year later, she's still in constant pain.

Robinson says she was told that her dismissal was unrelated to her injury, yet she lost her job as the state was starting to ratchet back spending due to the recession. She wonders if she was dismissed because her physical therapy sessions, which had exhausted her sick days and vacation leave, were cutting into her work hours.

Nevertheless, without a job—she's had only some temp work since—Robinson couldn't afford to maintain the health insurance that was a benefit of her state employment. Under the COBRA law, enacted by Congress after the Clinton administration's plan for universal health care died, Robinson had the right to keep her coverage, but only by paying for it herself. The tab: more than $500 a month. She didn't have the money.

And because of her pre-existing condition, other insurance—if available—would've cost even more.

Medicaid, the public insurance plan for the poor, wasn't available either, because Robinson's on-the-job injury was covered by workers' compensation. It pays for her treatment—but only if related to her spine and shoulder—and pays a weekly amount of $395.62.

When she tried to apply for Medicaid, she says, she was told she didn't qualify because her income—from workers' comp—was too high. "I try not to tear up too much," she says, "but I was just so mad that I could be turned away from Medicaid. I was hoping and praying that they'd be able to refer me to a neurologist so I could get my pills."

Ironically, she was asked, since she was then 43, if she planned to have more children. If she'd answered yes, she says, she might've qualified for six months of Medicaid coverage. "But I couldn't lie," she says. "I told them that bridge to Terabithia was closed a long time ago."

Robinson was an eager campaigner for Obama and serves as a co-chair of the ongoing Durham for Obama organization that has concentrated since his election on community service projects for low-income kids.

When she started on the Obama campaign, she says, it wasn't with health care in mind. But then Obama started talking about his mother's problems getting health insurance as she was dying, because of her pre-existing cancer.

Later, health care reform became her No. 1 issue, too.

"The other day, my daughter asked me, 'Mom, what are they waiting for? For you to get really, really sick and then what, you die? And then you're gonna be gone from us?'"

When Robinson spoke in Washington, she says, she didn't expect to be so emotional. But when she spotted some kids in the crowd, she says, "I just welled up, and I started getting really—my hands started clenching ..."

Her subsequent encounter with Hagan lifted her spirits, she says.

"I was hoping she'd come around [on the public-option question]," Robinson says. "I told her I had a pre-existing condition, and I mean she was riled. She was fired up." "

Moments later, Hagan was speaking at the town hall meeting. "She kept looking at me whenever she said pre-existing condition," Robinson says. "She kept talking about it like Obama when he was talking about his mom and her pre-existing condition."

With the kind of subsidized public insurance option contained in the HELP committee's legislation, Robinson says, she could afford to have health coverage. "As soon as I can see that neurologist," she says, "I will be so happy."

For a long time, Sen. Hagan was noncommittal on the public insurance option. As late as June 21, her spokesman was telling the News & Record of Greensboro that she was still examining various approaches, while attempting to ensure that "private health insurance isn't going to be destabilized."

Three days later, in a conference call with reporters, Hagan said, "the states should have role in anything this big," raising the prospect of 50 or more weak public options instead of one strong federal insurance plan.

N.C. Health Access Coalition Director Adam Searing shot back. Isn't the whole point of health care reform to "destabilize" the insurance industry? "Especially in a state like North Carolina, where one insurer [Blue Cross] insures the vast majority of people," Searing said, "Blue ought to feel threatened by competition."

In the 2008 presidential campaign, all of the leading Democratic contenders, including Barack Obama, said the public option would force the private insurers to shape up or die.

A public insurance plan similar to Medicare would be at least as comprehensive as the private alternatives—and a lot cheaper. Unless private insurers figured out quickly how to control their own costs—by bargaining harder for their customers—and to live with smaller profits, they would be buried by the public juggernaut.

To many listeners, it was a single-payer plan by other means.

But when Hagan came to Washington in January, she found that the health care industry was not just going to roll over and die under the threat of reform. From her front-row seat on the HELP committee, she saw what the Washington Post recently reported: The industry—the big insurers, the pharmaceutical giants, the hospitals, doctors, nurses and their thousands of lobbyists—were spending $1.4 million a day in the effort to eliminate or cripple any kind of public option.

And they had multiple venues to work: In the House, three committees were drawing up pieces of the reform package; in the Senate, the HELP committee was on it, but so was the finance committee—and they were going in different directions.

A major question for Hagan, still unresolved as the committees continue working, was the up-front cost of a federally supported insurance option when combined with universal coverage. That would make it potentially available to everyone, regardless of income.

If, suddenly, millions of workers currently covered by employer-paid health plans were dumped on the public plan, it could break the U.S. Treasury, especially since Congress was promising to subsidize households with incomes up to about $50,000 for a family of three.

Preliminary cost estimates from the Congressional Budget Office were running north of $1 trillion over 10 years, a number that might be recouped over time if the public plan adequately curbed the health care industry's appetites. Still, it was an unsettling number for a conservative Democrat like Hagan, fresh off her reluctant "yea" vote for an $800 billion stimulus package and a budget with projected deficits in the trillions.

So when Hagan walked into the HCAN-sponsored meeting in Washington, arm in arm with Rhonda Robinson and state AFL-CIO President James Andrews, she told the group she was unreservedly in favor of universal access to affordable insurance, but she wouldn't endorse—despite very pointed questioning—HCAN's "strong public option" plank.

The "how" of any public plan was complicated, Hagan tried to explain:"There's a lot of moving parts to this."

A big part of any reform plan must be preventive medicine and wellness, she said, which means training more primary care doctors and front-line medical staff and curbing the explosion of medical specialists, tests and costly procedures of dubious or no value.

She danced awkwardly around the public option issue, though. "There are a lot of different names we can call it," she said. "I think we might get caught up in the nuances of the words."

Within a week, though, Hagan resolved her "how" questions. The HELP committee issued a draft bill with a strong federal insurance plan, but sharply limited the number of people would be eligible to buy it. Only the uninsured, the self-employed and employees of small businesses (those employing up to 25 people) would be allowed to choose the public product or a competing private plan. Everyone else would be left in the private market; if companies dropped their coverage, they'd be forced to pay $750 per employee.

Every Democrat on the HELP committee, including Hagan, endorsed the approach. "We have crafted a plan," Hagan said, "that will stablilize health care costs and includes a community health insurance option [the federal plan], which I support. It is a backstop for people without affordable coverage ... the community health insurance option will compete on a level playing field with private insurance plans."

Perhaps with Robinson in mind, Hagan added: "This legislation also guarantees that a pre-existing condition will not prevent you from getting health insurance coverage."

However, it's not Game Over yet.

In the Senate, where 60 votes are needed to break a filibuster and some of the 60 Democrats are still not sold, the finance committee could still propose a no-public option plan, or President Obama could compromise it away in search of bipartisan support.

The latter possibility loomed large a week ago when White House Chief of Staff Rahm Emanuel told the Wall Street Journal that while Obama thinks a public option is the best way to achieve his goals for reform, it may be possible to achieve them without it.

Emanuel's remarks prompted a blast from the Progressive Democrats caucus in the House, the ripple effects of which were soon heard back in Raleigh and Durham.

When Obama was elected, a big question mark was his ability to mobilize, whenever crunch time came in Congress on his major policy initiatives, the same citizens army—some 10 million supporters and campaign contributors strong—that put him in office.

The president's answer was "Organizing for America," run by ex-campaign staffers operating out of the Democratic National Committee.

Last Tuesday, Alex Lofton, the OFA's southeast regional director, flew to the Triangle to ramp up the North Carolina chapter and put it to work on the "Week of Action" for the health care reform that starts Sunday, July 19.

But in Durham, where he went first, Lofton got an icy reception from activists who had been on the HCAN bus. They have never folded their "old Durham for Obama" tent and didn't like what Emanuel had said.

Lofton wanted to talk about how to get the OFA drive going "with the loudest drumbeat we can make."

But the 65 folks who met him wanted a guarantee that Obama wouldn't waffle on the strong public option. "Some things," said Rebecca Cerese, a Durham film producer and HCAN activist, "are non-negotiable."

Lou Meyers, another HCAN supporter and the owner of a small business, Hairport of Durham, went further, saying the president should've backed a single-payer plan, but since he didn't, he should at least bar the insurance industry from influencing what the public option is. "The whole insurance system is crazy," Meyers said, "and based on greed."

Meyers said Obama's reform objectives, listed on a single page that Lofton passed out, were too vague unless listed under a public-option demand. The insurance industry, Meyers noted, was listing the same objectives in its advertising.

Stella Adams, the state Democratic party's first vice chair and a longtime community activist, told Lofton that unless Obama was absolutely committed, "I don't know that that's something I want to organize around."

"How do we send the message back?" Adams asked.

Lofton conceded that, in contrast to a political campaign—with its clear electoral goal—organizing around the unfinished package of health care reforms "sucks."

"Believe me," he added, "this is testing us as organizers."

Obama's supporters should have faith in the president's judgment and know that, whatever compromises are made, "the president will stick to his principles," he said.

That assurance wasn't good enough for the folks in the room, however, some of whom sounded like they were ready to get back on the bus to Washington, this time with the White House as their destination.

A few days later in Raleigh, Lynice Williams, who led the "Freedom Riders" to Washington, underscored the point. "Organizers know there can be no compromise on this," Williams said. "Reform won't be true reform unless there is a strong public option."

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