Health care is one of those things that always caused Sandra Schlosser a lot of anxiety. “It was something I had always struggled with — I always owed some health care provider, or was on some payment plan, or had some struggle about a claim, or had high deductibles,” the 52-year-old Vermont resident recounted. “It had never even occurred to me that it could be something that could be changed or that there could be hope for a better system.”
But five years ago, when Schlosser got involved with the Vermont Workers’ Center, her eyes were opened to a different kind of worldview. The grassroots social justice network was mobilizing support to reform the health insurance model in the state, and they were asking people like Sandra to share their stories about why the current system wasn’t working. All of a sudden, she was part of a movement of people insisting that health care is a human right. She was connecting with other Vermont residents who had similar frustrations with their own medical debt and lack of affordable insurance options, and who were taking to the streets to fight for universal coverage.
In the spring of 2011, they succeeded. Thanks largely to the constant pressure that the Vermont Workers’ Center helped put on the legislature, the state approved Act 48, which requires lawmakers to build the first single-payer system in the country by 2017 — a nationalized health care system in which every resident is covered under a program run by the government.
Conventional wisdom suggests Vermont got that done only because of its liberal political leader, Peter Shumlin, who campaigned on single payer during the 2010 gubernatorial race. But activists in the state say that’s not exactly the whole story. The legislative victory actually dates back to 2008, when a lot of people said universal health care wasn’t politically possible, even in the small, progressive state. Back then, the Vermont Workers’ Center worked to build a network of people — people whom Shumlin has credited for putting him in the governor’s mansion in the first place — who were energized about health care reform. Those activists were eager to hold their lawmakers accountable to the vision that every individual deserves insurance, in the same way that people simply deserve air to breathe and water to drink and a roof over their head.
“Seeing the political support was amazing,” Schlosser, who continues to volunteer with the organization, said. She noted that she was initially surprised to see Act 48 pass after previous failed attempts in the legislature. “It really showed me that the government belongs to us and it’s part of our democratic right to speak out. I had never been empowered in that way before.”
Enshrining human rights principles into law
Darya Marchenkova, the communications coordinator for the Vermont Workers’ Center, calls Act 48 “a pretty groundbreaking law.” When it was approved, the rest of the country was embroiled in a debate over President Obama’s considerably less progressive health reform law. And while that shift may have felt big for the country, it was small compared to what Vermonters were trying to accomplish. “We’re looking to create a pretty huge paradigm shift in the way that health care is thought about,” Marchenkova said.
Vermont wants no part in President Obama’s signature health law. The Workers’ Center sees it as simply a piecemeal reform — according to Marchenkova, “it’s trimming at the leaves of a very big problem, but it doesn’t get to the root of the problem” because it’s still within the context of a system that gives control to the insurance industry. But the state couldn’t immediately opt out of Obamacare, and was required to set up a health insurance marketplace under the law. Vermont plans to apply for a waiver to sidestep the Affordable Care Act beginning in 2017 so it can implement its own single-payer system.
On paper, the concept is pretty simple. Activists like Marchenkova and Schlosser want a health care system that’s built around people’s needs rather than profit margins. They don’t want anyone to struggle to get medical care because they can’t afford it, or because they work at a job that doesn’t provide a generous health insurance package. They want the government to recognize health care as a public good, an intrinsic human right that every resident is entitled to receive regardless of their income or influence.
We’re looking to create a pretty huge paradigm shift in the way that health care is thought about.
And Act 48 actually enshrines that human rights perspective into law. The legislation stipulates that the forthcoming single-payer system must be based upon five fundamental principles of human rights: universality (everyone has to be included), equity (people pay what they can and get what they need), accountability (guided by people rather than by industries), transparency (decisions are being made in the public sphere), and participation (the people have the power to appeal to the legislature and change parts of the system).
The Vermont Workers’ Center modeled that human rights framework after several international treaties — including the United Nations’ International Covenant on Economic, Social, and Cultural Rights (ICESCR), which declares the right to “the highest attainable standard of physical and mental health,” and which the United States has not ratified. Rather than pushing for a specific policy framework for a universal health care system, they lobbied for a new approach that honors human rights by sticking to those guiding principles. Now, lawmakers in the state will have to figure out how to make it work in practice.
Marchenkova acknowledged that activists are up for a tough fight during the state’s next legislative session, which is when the specific policies necessary to craft the new system — called Green Mountain Care — will begin to be hammered out. Her group will have to make sure the final law isn’t weakened by insurers, lobbyists, or lawmakers. That’s much easier said than done. Compared to every other sector in the country, the pharmaceutical and insurance industries are the ones that have spent the most money on influencing lawmakers over the past 16 years, nearly $400 billion dollars between the two in 2013 alone.
In Marchenkova’s words, they’re up against the entire status quo.
Nonetheless, grassroots organizers remain optimistic. They’re hopeful about Vermont’s future, as well as about the slow shift spreading across the country to reframe health care in terms of human rights.
“This came about because of years of grassroots organizing on the ground. That’s really what it takes,” Marchenkova said. “It’s a model that people can use in their own communities — it can be done. We want to be an inspiration to other parts of the country. I think it’s really important that we start telling this story about the domino effect around the country because of grassroots movements that’s going to change the way that health care looks in the United States.”
Bringing more people into the conversation
But as the country remains embroiled in heated discussions over the Affordable Care Act — which is continually derided as socialism, even though it’s not as dramatic of a reform as the type of universal health system that Vermont is fighting to enact — is it really possible that other states could make a similar move toward single payer? Is that a realistic goal, or mostly wishful thinking?
In response to that question, several activists who spoke with ThinkProgress pointed to Canada, whose single-payer system began in one province and eventually spread to the rest of the country. Saskatchewan, a rural and sparsely populated province that political scientists say didn’t initially appear to be ripe for that kind of innovation, passed a law in 1946 to provide free hospital care to most residents. If the spark started in Saskatchewan and grew into national reform, perhaps the same process could be set in motion by Vermont.
Some people outside of the center of the movement think that’s a real possibility. “If the Vermont experiment works, other states will follow. American pragmatism will trump ideology,” a recent New York Times op-ed argued. The progressive advocacy group Public Citizen has developed a guide for other states that want to follow in Vermont’s footsteps; the first step, according to the legislative road map, is to pass a law like Act 48.
Plus, “human rights” activists think they’ve hit on a messaging strategy that will propel them forward. Another volunteer with the Vermont Workers’ Center pinpointed the problem with previous campaigns that have advocated for sweeping health care reform: “When you talk to people about single payer, their eyes gloss over,” she pointed out. “The human rights framework is much more straightforward. There’s something very basic about the idea that we all get sick and want to stay healthy.”
Our legislators are not ready for this…It’s got to come from the ground up.
Drew Christopher Joy, who works with the Southern Maine Workers’ Center to lead a health care campaign in his own state, concurred with that assessment. “We think that people get really bogged down and have a lot of baggage around legislative terms and policy terms. Universal health care. Single payer. People have a lot of associations with those words, and it’s a barrier for having the conversation,” he said. “But we all understand what it means to get health care and need health care, and we understand that better than single payer.”
“I think there’s a lot of frustration around the way things work currently — like, ‘this is broken,’ “ Joy added. “I think all of us have felt alienated at one point or another in trying to access health care. People are really ready to connect the dots and they’re ready for an actual answer.”
In addition to Maine, there are similar “health care as a human right” campaigns growing in Maryland, Pennsylvania, Oregon, and New York. Just as Marchenkova suggested, those efforts are modeling themselves after the groundwork that was laid in Vermont.
“Our legislators are not ready for this. But I think that the grassroots is,” Joy said. “So our job is really to find supporters, move folks to action, build that power from the grassroots, and really show our legislators that people in the state are ready and they need to get with the times. It’s got to come from the ground up.”
A human rights framework for health reform
Obamacare’s coverage expansion certainly hasn’t gone exactly as planned. Even as health reform marks its first milestones — surpassing its inaugural enrollment goal and contributing to a historic drop in the national uninsurance rate — it’s not making equal gains in every area of the country. More than 20 states are still refusing to implement its Medicaid expansion, which the Supreme Court ruled optional when it upheld the law. It’s part of a larger resistance among GOP-led states that don’t want to be seen as facilitating reform, and it’s particularly damaging to the millions of low-income Americans who are now caught in a coverage gap: making too much to qualify for public health insurance, but too little to qualify for federal subsidies to purchase a private plan on the new marketplaces. They’re locked out of the promise of affordable health care altogether.
For thousands of activists across the country, this is the most prescient health care fight. They’re filling their state capitols, engaging in acts of civil disobedience, holding “sick-ins” in front of their governors’ mansions, and using coffins as a symbol for the people who will die without access to affordable health care. They’re not asking for single payer, but they are basing their rhetoric on the argument that resisting Medicaid expansion is a violation of human dignity and the right to life.
“These are people, not statistics,” Paul Gibbs, an activist in Utah who filmed a documentary called Entitled To Life to urge his lawmakers to expand Medicaid, explained. “Once you hear about someone who’s working two jobs to support their kids while they’re dying of cancer, or who is going to college despite a neurodegenerative disease, you start seeing it really differently. When you really look at the individual people who are affected by the loss of health care, that changes people’s minds.”
The individuals working on “health care as a human right” campaigns are conflicted about their role in advocating for Medicaid expansion as an incremental step toward their larger goal. The Southern Maine Workers’ Center did lend its support to the statewide campaign to pressure the legislature to expand Medicaid. But in retrospect, Joy isn’t sure that was the right strategic move — they didn’t succeed, and he worries it distracted them from their primary grassroots push toward something bigger and better. He noted that the Affordable Care Act “complicates the landscape” for his work.
“We do want to advocate for more people to have access to health care,” he said. “But it’s all a question of framing — how do we continue to have a conversation that says, when we say everyone needs health care, we really do mean everyone? How do we frame health care as a public good?”
Once they start seeing it in those human rights terms, and seeing that people can’t survive without it, there’s real hope.
For Medicaid proponents, however, the push to extend public insurance coverage to additional low-income Americans is something that’s perhaps winnable even before more states attempt their own versions of Act 48.
“I’m very optimistic about a future in which all states accept some form of Medicaid expansion,” Gibbs said. “I really think that people care about each other — and once they start seeing it in those human rights terms, and seeing that people can’t survive without it, there’s real hope. It’s hard for me to think of much of anything that’s more of a fundamental human right than the right to stay healthy and alive.”