Health care reform result of lawmakers, public workers, Seattle boy

If “Obamacare” deserves a face, it’s not Barack’s.

It’s a young Seattle boy named Marcelas Owens, whose mother, like thousands of Americans every year, died of a treatable disease.

Or maybe it’s the public-service workers, unknown to the national stage, who now have picked up the baton and are sprinting for a Jan. 1 finish line. Their names? Karen, Eileen, Randi, Michael, Mary, Patty, Daphne, Gail …

Marcelas, however, continues to inspire, even though it’s for a reason none would envy. On Feb. 18 Washington’s new governor, Jay Inslee, invited the now-14-year-old in for a quiet visit. They had met before, several times, while Inslee worked in Congress. But on that February afternoon, the boy and his grandmother got to check out the state Capitol and governor’s office. A staffer snapped a picture. The next day, a reporter visiting from Spokane asked Inslee what he wished people could understand about Washington’s massively complicated effort to implement health care reform.

“I wish they knew Marcelas,” the governor shot back. “Yesterday he was sitting right there, in the same chair where you’re sitting now. … To see a son who lost his mother who did not have insurance. … This is not acceptable. We’re a better state than this,” Inslee said.

Marcelas is better known than many victims of health care, American style. His mother suffered from pulmonary hypertension. Ailing, she lost her job – and with it her health insurance. In 2007, unable to get care, she lost her life. After his mother’s death, Marcelas and his family began to appear at rallies for reform. Some influential people noticed and provided a podium for his story. On March 24, 2010, the 11-year-old boy stood beside the table and watched as President Obama signed the Affordable Care Act into law.

Marcelas was hardly alone.

Hundreds contributed to that law, millions argued about it, and now, in state offices across the country, thousands are working to implement it. They, as much as a boy from Seattle, are the faces of health care reform.

The legislators

Karen Keiser, for 16 years a member of Washington’s Legislature, represents the district surrounding SeaTac airport. There, immigrants work in low-income, service-industry jobs – changing hotel sheets, driving taxis, washing dishes – and live in small ethnic communities. Bhutanese. Sudanese. Somalis. Keiser said her district includes “Third World levels of poverty.”

Poverty like that comes with health care issues. Keiser began to work for a solution so the working poor “won’t end up in the ER with Stage 4 cancer because they had a backache and didn’t have a doctor, which has happened over and over and over again.”

In addition to her legislative duties, Keiser began traveling to the nation’s capital on her own dime, she says. She helped form a working group of legislators like herself from other states. They began to advise the Obama administration on what states needed to fix health care. “The system was not sustainable. It was going over a cliff. The whole economy was hobbled by the costs. We saw our state budget revenues fall in the tank. There was no way to provide services.”

Repeatedly, she flew across the country to push reform. What drove her? “I like real change,” Keiser said. “I don’t like to do housekeeping, which is 90 percent of what you do in the Legislature.”

After the president signed the Affordable Care Act, it was Keiser’s turn again. Working as chair of the state Senate’s Health Care Committee, she helped draft and push through the Legislature a variety of laws necessary to Washington’s implementation of the federal act.

On Keiser’s office wall hangs a large cartoon. In it, she’s wearing a fedora and swinging a whip. The caption reads: “Indiana Keiser and the health care crusade.”

Among her colleagues is Rep. Eileen Cody, a registered nurse who chairs the House Health Committee. Cody jokes about the number of working health professionals who now serve in the Legislature; they call themselves the “nurses caucus.”

This year, Keiser lost the chairmanship of the health care committee, as Republicans plus a couple of dissident Democrats formed a coalition to rule the Senate. Now, Keiser plays a different role, sometimes watching her proposals die but still hopeful, she says, that a new health care system’s on the way.

Keiser speaks respectfully of her successor in the chairman’s role, Sen. Randi Becker, a Republican and a veteran manager of medical offices. Becker understands the need for reform, Keiser said, but the Republican caucus includes some who disagree.

The government workers

In a run-down, unmarked office building several blocks from Keiser’s Olympia office, Michael Marchand sits at a slightly battered desk, making plans to get the word about reform to those who need it. His title is director of communications for Washington’s Health Benefits Exchange. This organization, born a year ago under a law that Keiser sponsored, will operate the new website where Washington residents can purchase subsidized health care coverage.

But there’s more to it than a website. Authors of the federal law knew that people who cannot afford health insurance may not have easy access to computers, or experience with them or with insurance – and may not speak English as their native language. The law requires a telephone call-in system and calls for the hiring of “navigators.” These will be trained facilitators, deployed all over the state, particularly in locations where uninsured residents are likely to be found: libraries, emergency rooms, neighborhood centers, churches – all the places, Marchand says, “where people eat, work, play and pray.”

Health care, Marchand says, “is very personal. Depending on culture, where people get information may differ.” Although the navigators will not be allowed to handle money, they will be trained, in a personal and culturally appropriate way, to help people understand health care coverage and how to purchase it.

This spring, Marchand will request bids for a contractor to operate the navigator service.

Several blocks away at the Washington Health Care Authority, similar plans are afoot to reach people who will qualify for Medicaid if the Legislature expands coverage to those earning up to 138 percent of the federal poverty level.

Mary Wood is among the state employees who have to figure that out. She coordinates with public health workers such as Patty Hays and Daphne Pie in King County. Wood is developing a program to equip front-line caseworkers with laptops and scanners so that, when someone who needs Medicaid is found, their application can be completed on the spot.

Yes, Wood says in response to a reporter’s question: A large church serving Spokane’s huge Russian immigrant population could be “a perfect example” of a location where laptops and training could be provided, to facilitate applications for health insurance coverage.

Meanwhile, Hays and Pie have broken down King County’s population to ZIP code level and smaller. They worry about language barriers. If the state prints brochures about coverage opportunities, should local health workers get them translated? “Some populations don’t have words in their native language that equate with insurance, or deductible, or co-pay,” Hays said.

“What we’re trying to get at is where are the gaps,” Pie said. “The Latino community in Algona … the Burmese population in Tukwila … the Pechek community … the community colleges … the housing projects.”

After the new system surmounts the communication gap and those eligible begin to get coverage, tougher questions will arise.

The Health Care Authority

That’s where Gail Kreiger spends her days. A registered nurse, Kreiger works for the state Health Care Authority, which runs both Medicaid and the health insurance programs for state employees. The authority wields big influence, deliberately serving as a model for reform. Kreiger’s job is to study the most agonizing questions in medicine: Which technologies should be covered? According to medical outcome data, what works? What doesn’t?

In San Francisco there’s a new treatment for neurofibroblastoma, a nerve condition affecting children. The treatment may be far away, but for victims of the disorder “it’s the only chance they have.” So, Kreiger says, the state approves it.

After a battle that included a lawsuit by parents, Kreiger worked to expand treatment options for children diagnosed with autism. Regulations had presented obstacles to some of the most knowledgeable experts, who tend to have educational rather than medical backgrounds. Now those obstacles are gone, and new doors have opened for treatment aimed at developing the brains of autistic children. These services will be covered, Kreiger says, under Medicaid and the Affordable Care Act.

Another of Kreiger’s programs created an online decision template to help doctors decide when imaging tests such as CT scans are really necessary. Cody, the nurse-legislator, had pushed though a bill to reduce excessive exposure to medical radiation. Now, Kreiger says, “we’ve reduced our expenditures in this area by a third. That’s how much inappropriate imaging had been done.”

The boy

Change. It’s not easy. But if you’re a kid whose ailing mother couldn’t get the treatment she needed to stay alive, you understand difficulty, and you know when something’s not right.

Washington U.S. Sen. Patty Murray has been quoted by the New York Times, describing a health care reform rally where she first met Marcelas Owens: “After I spoke, I turned around and there was this little boy standing next to me, looking right straight up at me with his big brown eyes, and said to me, ‘You can’t let anybody else die like my mom did.’ ”

Inslee said that of all the issues he works on, “everything else pales next to health. This is about life itself – the only treasure. If people knew Marcelas, there’d be no dispute about this.”