With my counterpart from the Montana Human Rights Network, I set out this August to conduct focus groups in Lewis and Clark County, western Montana, to explore people’s health needs and their experiences with the local health care system. To our relief, we did not attract town hall size groups ready to vent their engineered hate, but we also did not fully escape the ugly reverberations of Fox News and Talk Radio. Some people with low incomes and very limited access to health care looked with disdain to the perceived health needs of others — particularly to those who had already been “othered” by decades of right-wing ideology (immigrants, the poor) — as an explanation for their own unmet needs. The community spirit of a frontier area sat in uneasy tension with the blaming game promoted on the airwaves from far away.

Yet we also heard plenty of other voices, from the poor to the privileged, who reported barriers to insurance coverage, a shortage of doctors, and a lack of respect for human beings in need, and who  openly welcomed the notion of health care as a human right for all, regardless of ability to pay.

This reflects the other aspect of the national debate, in which the human right to health care has gained enormous traction over recent months. Perhaps the Wall Street Journal serves as a suitable indicator — hardly a week passes in which this organ of US capitalism doesn’t feature a rant against the human right to health care. But we only have to look at the town hall meetings themselves to gauge the growing support for rights-based health care: meetings in which the question of the right to health care was raised, affirmed, or in which it dominated entirely.

Those other voices also give insight into the other, non-clichéd reality of Montana. Montana is a state represented almost exclusively by Democrats, and its progressive history fuels vibrant grassroots activism on health care, from the Network’s Human Right to Health Care campaign to numerous active and committed single payer groups, which recently gave Senator Baucus a run for his hard-earned health industry money. There is no shortage of courageous and innovative initiatives either: a Montana State Senator, Christine Kaufmann, introduced a constitutional amendment for the right to health care, and a local Board of Health — driven by the commitment of a Helena city commissioner whose spirited support for the right to health care can be heard here — recognized health care as a human right and set up a residents’ task force to determine how to ensure universal access to health care locally. Our ongoing field research has been designed to support the pioneering work of this task force, which will continue its work for and with the people of Lewis and Clark County beyond the fanfare of the right-wing media circus.

I spent much of my life working in the non-profit sector, only recently deciding to try my hand at working inside the “system.” I designed a health reform project for the King County Board of Health based upon international human rights principles and was able to secure a consulting position through which I assisted board members in advocating for them with the general public, health organizations, and members of the state and federal legislature. It wasn’t easy, and it continues to be an education. As I describe in my upcoming article in Volume 11, Number 1 of Health and Human Rights, working to persuade elected officials to adopt and enact human rights concepts often requires finding ways to make them look good for doing so.

Our recent press conference provides a good example of how these dual goals were met throughout the project. The press conference both highlighted the chair of the board of health and promoted health and human rights standards; because I was a county consultant, I didn’t have to do it alone — I had access to the county communications team, the county press conference room, and county media facilities (TV and internet).

In order to make the event press worthy, I brought together the chairs of the boards of health from five other counties (all of whom are elected officials). These six counties together represent over 60% of the state population and, as provided in the press release, the health of over 4 million people. My belief was that a joint statement from a group representing such a significant proportion of the state population would be of greater interest to the media and the public.

To prepare for the conference, I worked with the public health staff in each county to have their respective boards accept King County’s health reform principles (which incorporate international human rights standards), select the speakers, and prepare the talking points.

The King County Board chair, King County Council member, Julia Patterson, introduced and welcomed everyone to the conference. She spoke to why local government engagement in health reform was essential, and she described the board’s health reform principles. She also stated that local governments wanted health reform this year and that reform should address community health and the underlying determinants of health, not just medical care. Each board member expanded upon this — by commenting on specific public health programs, telling compelling stories about their constituents, or speaking philosophically about how health care was a public good that should not lend itself to profit making.

To supplement these statements, I prepared a list of frequently asked questions on health reform and suggested answers for each speaker. We put together a press packet that contained information about public health and human rights principles, a copy of a letter in support of health reform signed by the participants and sent to federal lawmakers, a list of the county legislation supporting health reform, and a list of effective, community-based health programs in each county.

The conference received good press coverage. Television, radio, and print media from Seattle attended the event, and media from other counties participated by speaker phone. Questions from reporters were as expected: Why should local governments be interested in federal health reform; why would local governments be taking on a “partisan” issue when health boards were non-partisan; and why would community-based interventions have an impact on individual health?

Through answering these questions, the board members were able to provide those present, and ultimately the general public, information and education about health and health care reform without the disruptions and fear mongering that have been so prevalent at town hall meetings. They were also able to explain how their collective concern about community and individual health had brought them together, across party lines and across the region, to promote health reform.  The outcome was three clips on local TV stations, two radio stories, two internet publications, and three newspaper articles throughout the six counties.

In my Critical Concepts article in the forthcoming issue of Health and Human Rights, “Suffering and powerlessness: The significance of participation in rights-based approaches to health” (available online in PDF or HTML format), I refer in passing to a sweeping judgment by the Court in July 2008. This ruling, in taking seriously the enforceability of the right to health, called for the government to restructure that country’s health system. However, recognizing that it did not have the expertise or legitimacy to determine which treatments and services should be included in the social insurance scheme, the Court called for a broad participatory process to determine the content of a newly revised and unified benefits scheme. In a Perspectives piece in this issue, “Democratic deliberation or social marketing?” (PDF, HTML) which is forthcoming in Spanish in a Colombian journal, my co-authors and I explore in much greater detail the degree to which the Colombian government has met the criteria for participation set out by the Court. We conclude in large measure that it has not and that, as a consequence, the reforms being put in place are at risk of not being accepted by the Colombian public. In turn, people may continue to flood the courts with lawsuits that undermine the financial sustainability of the system, although this is precisely the result that the Court’s structural judgment sought to avoid.

The case of Colombia puts into sharp relief the potential strengths and limitations of a court-initiated process of health reform that calls for — and indeed requires — meaningful participation in a context of relatively low social mobilization and a highly autocratic regime. Furthermore, it vividly illustrates both what is at stake in defining participation, and the risks of participatory processes that serve only to provide a patina of legitimacy to decisions taken beyond any public decision-making arena. We are flooded with new forms of “rights-based participatory mechanisms” all the time in public health — for example, “observatories,” “round-tables,” and “multi-sectorial committees.”  Yet we must not uncritically accept these as advances in rights-based approaches to health lest rights-based approaches devolve into the same kinds of feeble, managerialist participation that have plagued health and development arenas for decades and do nothing to genuinely empower those who are most marginalized.

According to an NPR article on July 27^th and a NY Times article on July 28^th, Luis Alberto Jimenez came to the US from Guatemala without immigration papers about ten years ago to look for work. He left behind a wife and two children in a small rural town to work as a day laborer in Florida. The following year, in 2000, Mr. Jimenez was hit by a drunk driver in a stolen vehicle, an accident that killed two other people. Mr. Jimenez was left paralyzed and brain-damaged. Once he was stabilized, the Florida hospital found that it could not legally discharge Mr. Jimenez, as no skilled nursing facility (SNF) would accept him given his inability to pay.

As a result, Mr. Jimenez remained at the hospital for three years, until 2003, at which point the hospital, Martin Memorial Medical Center, sought a state judge’s permission to deport Mr. Jimenez to Guatemala. The judge granted his permission, but the patient’s legal guardian, Montejo Gaspar, filed an appeal and emergency request to delay the move. However, without informing the legal guardian, or Mr. Jimenez’s family, the hospital proceeded to charter a flight in July of 2003 for $30,000 and deported the patient to Guatemala. The patient was then admitted and shortly discharged from a hospital in Guatemala. As a nurse, it is my hope that the health care reforms will consider devastating cases, such as that of Mr. Jimenez, and include some measure of protection for those who suffer catastrophic injuries while working in the US, regardless of their immigration status.

In 2004, the state appeals court voided the judicial deportation order upon which the hospital based its actions. Mr. Gaspar filed a lawsuit to cover the cost of medical care in Guatemala, as Mr. Jimenez now lives with his elderly mother in a remote rural town. When the NY Times visited the patient last year, he had not received any medical care for five years, was confined to his bed and suffered regular seizures. On July 27^th, a 6-member all-white jury unanimously decided that the Florida hospital did not act unreasonably.

Why would a hospital secretly move a patient without informing his guardian or his family? Why would an all-white jury be considered to be a fair trial by peers for a man who is a Mayan Indian from Guatemala? Why are hospitals and state judges acting in the federal arena of immigration and deportation? But moreover, how is it in the best interest of a severely impaired patient to be deported, to a life without medical care, for an injury caused, recklessly and unlawfully, ironically by a person who is presumably a US citizen?

As accurately noted by the NY Times article, this case is overtly fraught with anti-immigrant sentiment. Undocumented immigrants are targets of many unfounded accusations: that they are bankrupting the medical system; that they utilize public services while not paying taxes; that they are taking jobs from US citizens. None of these myths have been found to be true. On the contrary, immigrants who come to the US greatly benefit the country in multiple ways.

But at the end of the day, in its present form, our health care system is driven by the dollar. And in this climate, which concerns itself more with profit than with health, or with humanity for that matter, hospitals will now be bolstered by this legal decision to “begin planning for discharge as soon as they admit patients they suspect cannot pay” (NPR source). How long will this country with one hand continue to benefit from the work done and risks taken by immigrants, while with the other hand continue to marginalize and discriminate against them?

A June article in the New Yorker by Atul Gawande, which is reportedly required reading at the White House, examines the costs of health care by looking at the most and least expensive health-care markets in the US. In particular he studies McAllen, Texas, which has one of the highest costs of medical care per person in the country, and Rochester, Minnesota (home of the Mayo Clinic), which has among the lowest. Rochester also provides some of the best quality health care in the nation. Gawande’s findings led him to conclude that the Mayo Clinic system, which pays doctors an annual salary to keep them from treating their practices like “profit centers”, and emphasizes a peer-review process to improve quality of care, are the best hope for improving American health care. This requires breaking the “untenably fragmented, quantity-driven” systems that are becoming the norm in US medical care.

Gawande notes at the end of his piece that the decisions that need to be made about America’s health care system are greater than the public versus private insurance debate; rather, they involve a total reorganization of the health system. Enacting the principles already in place in the lowest-cost, highest-quality medical institutions in the country – removing any financial incentive for doctors to order unnecessary procedures and taking collective responsibility for patients – require a significant reordering of our priorities.

Others are also looking outside of the political discussions that focus on either “raising taxes or cutting care,” instead seeing a better way: “redesign.” Medical professionals from ten communities across the country with below average health spending and above average health outcomes recently traveled to Washington DC to discuss how changes they have implemented have lowered cost without reducing quality. Gawande, one of the meeting’s organizers, explained that change in these communities occurred quickly, as “[h]alf of these communities used to be high cost and transitioned to low cost over the last decade,” suggesting that national reform is also possible.

The meeting, organized by the Institute for Healthcare Improvement, allowed professionals from low-cost, high-quality hospital groups to exchange ideas about cutting costs and preventing unnecessary care. For example, physician groups in Everett, Washington were combined and two hospitals were merged while health coaches counseled healthcare workers to smooth admission and discharge practices. A health group in La Crosse, Wisconsin, has focused on working with elderly patients to create advanced directives, a crucial component of end-of-life care that can also help lower healthcare costs significantly. These methods, along with a shift to electronic medical records, improvement in health care data collection and better coordination among providers, were among the most common steps cited by medical groups seeking to restrain expenses.

Similarly, health care practitioners in Birmingham, Alabama studied a health program in Zambia to create their own AIDS clinic based on the Zambian model. At this clinic, called “Project Connect,” patients receive appointments in five days or less after calling, and social workers interview all patients to address issues that might make it difficult for a patient to return for follow up appointments. Another example is the Prevention and Access to Care and Treatment Program, a community-based project that uses community health workers to assist HIV/AIDS patients in staying adherent to treatment. The program, modeled on work begun in Haiti under Partners in Health, has been adopted for use in inner-city Boston and is expanding to include New York City and Miami.

Mark Dybul, the former US Global AIDS Coordinator, explains why methods of care in poorer nations are now receiving greater attention: “We learned from Africa that in a very resource-limited setting, you can do very effective chronic care delivery that doesn’t have to be overmedicalized.” With much of the debate on health care reform focusing on lowering expense, it appears that these cost-effective programs from the developing world will become more popular to US health care providers.

More information on health in America:

Getting good value in health care

Whistleblower tells of America’s hidden nightmare for its sick poor

Concerns on plan show clashing goals

Forget who pays medical bills, it’s who sets the costs

How are the current proposals for health insurance reform treating an industry that siphons off roughly $10 billion in annual profits? We now have two health reform bills reported out of congressional committees (”America’s Affordable Health Choices Act” in the House and the “Affordable Health Choices Act” in the Senate – using terminology pushed by Democratic pollsters, no doubt). Neither of them meets key human rights standards, and both cast private insurance corporations in the role of gatekeepers that control people’s access to care. At the same time, opposition is mounting against all and any reform measures.

Yet there continues to be great hope among many long-time health policy advocates that will we see meaningful health reform later this year. Advocates count on this reform to solve or at least alleviate the current health care crisis, which results in an estimated 22,000 preventable deaths due to lack of insurance each year, as well as skyrocketing costs that bankrupt families and public budgets alike. Pundits optimistically point to the many new measures the reform bills introduce: reining in the “free” insurance market through tougher regulation, including through a so-called Exchange mechanism; setting up a public insurance plan; expanding Medicaid; requiring employers to contribute to costs; and mandating everyone to buy insurance. All Americans (though not all immigrants – documented or not) will get health insurance – or so the hopeful want to believe.

Their hope is born out of desperation. Most advocates are painfully aware that health care is treated as a market commodity in the United States, and that market rules are stacked against those with little purchasing power. And these are usually the very people who need health care the most: poor people and people with serious health issues. In a blatant affront to the basic human rights principle of equity, minority groups and poorer communities in rural and inner city areas suffer disproportionally from market barriers to health care.

Reminders of the insurance industry’s power are everywhere: people who lack insurance, people whose claims are denied, whose coverage is rescinded, or who pay exorbitant premiums that may – or may not – preempt catastrophic bills but do not cover actual visits to the doctor. The business model of insurance companies only works if as many healthy people as possible buy policies and pay premiums that are as high as possible, and if those same people then forgo actually using the health care covered by that policy. None of this is news to mainstream health reformers, yet hardly anyone points to the emperor without clothes: because insurance corporations can profit only by restricting access to care, they act as hostile gatekeepers rather than as vendors of a value-adding service. In one of our news media’s rare instances of bluntness, a Paul Krugman blog in the New York Times explains that “private insurance basically spends a lot of money on socially destructive activities.”

Yet both Obama and congressional leaders remain worryingly silent on the role of the insurance industry, despite their rhetorical shift from health care to health insurance reform. Hence they struggle to devise a sustainable cost trajectory for their proposed reforms, which are weighted down by the immense costs of keeping private insurance corporations in business. These costs include profits and corporate salaries, plus the even greater amounts wasted on underwriting and marketing to exclude people who might actually need care, and on claims administration to deny care to those who have already paid for it. To help meet those costs, reformers have proposed a requirement on all individuals to purchase an insurance policy, which amounts to a massive bailout for an industry that has continued to make record profits and is accountable only to its shareholders. Such public subsidies to the industry, via policyholders, constitute the greatest cost factor in any of the bills under discussion, yet they fail to guarantee access to health care for all. Even under the best proposal, people would still have to pay up to 11% of their income in premiums for a skimpy policy, on top of co-pays and deductibles. These provisions illustrate that the economic costs of sustaining the private insurance industry can only be paid through the social costs of restricting access to care to those able to pay.

Always on public relations alert, all key industry players – hospitals, pharmaceuticals and insurers – claim to have made concessions that would curb the excesses of the market and sustain the policy consensus for commodified health care. Yet smoke and mirrors cannot hide that market-based health care is inherently unable to contain costs at the same time as ensuring access to quality care for all. Even the President accepts that universal coverage is not possible without a publicly funded and administered system, such as single payer, that automatically includes everyone. Such a system would treat health care as a public good rather than a market commodity, and enable access on the basis of need, not payment. Guided by the principle that basic human needs give rise to government human rights obligations, such a public health care system would be financed collectively in order to meet people’s health needs with equitably shared resources. Instead of providing profits and benefits to a few, a rights-based system would enrich everyone living in a healthier society.

A hearing by the House Subcommittee on Oversight and Investigations on June 16 brought up criticism of the policy, reporting that in the past five years, over 200,000 people have had their coverage cancelled by three of the largest US health insurers, WellPoint Inc., UnitedHealth Group, and Assurance Inc. The hearing also found evidence that employees of these insurers had been encouraged and rewarded for terminating policies of people who had serious medical expenses, saving the companies over $300 million (see the performance reviews of these employees here and here, and the complete findings of the hearing here).

The subcommittee also heard testimony from patients and families of patients who had lost insurance coverage after developing serious health problems. Robin Breaton, a nurse from Texas, lost coverage three days before she was meant to undergo a double mastectomy to remove invasive breast cancer. Her insurer, Blue Cross, cancelled her policy after launching an investigation into her medical records and finding a note from her dermatologist that mistakenly noted she could have had a pre-cancerous skin condition. At the hearing, Breaton explained, “The sad thing is, Blue Cross gladly took my high premiums, and the first time I filed a claim and was suspected of having cancer, they searched high and low for a reason to cancel me.”

Losing health insurance, especially while struggling with poor health, can be financially devastating. A new study has found that medical problems contributed at least in part to almost two-thirds (62%) of bankruptcy filings in 2007. Even those with health insurance were not immune to financial losses – over 75% of those in the study had coverage, and 60% had private insurance. Researchers found that illness frequently led to job loss, which in turn led to a loss of insurance coverage. The lead author of the study, Dr. David Himmelstein of Harvard University, explained: “For middle-class Americans, health insurance offers little protection…. Private health insurance is a defective product, akin to an umbrella that melts in the rain.”

California Insurance Commissioner Steve Poizner proposed new regulations that would require application forms to be written in clearer language and include “not sure” options to questions about medical conditions (see full text of the proposed regulations here). Many of the questions in insurance application forms are difficult to understand or intentionally confusing. Under the new regulations, insurers would not be allowed to drop policies if the patient was unaware of, or did not understand, the medical information requested in the application.

More links:

The Health Care Crisis Hits Home

Commentary: Health Care Outrage Goes Uncovered

Consumerist: Insurance Industry Still Wants to Cancel Sick People’s Coverage

Insured but Bankrupted by Health Crises

Anja Rudiger of the Human Right to Health Program, said that a set of principles should be used to determine whether a system supports health care as a right or if the “profit motive” overshadows the affordability and accessibility of care.  Rudiger has previously written an article for Health and Human Rights demonstrating the use of a “human rights framework, [in which] ethical principles — or “values” — are the premise for action.” This framework, Rudiger asserts, allows activists and policy-makers to re-frame the debate on health care by leveraging,  “theoretical and empirical findings to make a case for re-envisioning health care as both a right and a public good.”

Montanans for Health Care, a group involved in this movement, is pushing for congressional hearings.  In particular,  they address their concerns to U.S. Sen. Max Baucus, D-Montana, who chairs the Senate Finance Committee. Senator Baucus is the committee chairman writing the Senate Health Bill, who, along with Massachusetts Senator Edward Kennedy, “has been criticized by progressive groups for bowing to pressure from the health insurance industry lobbyists,” reports Democracy Now, an independent daily TV/radio news program. Earlier this year at a National Health Policy event, Sen. Baucus said, “at this time, in this country, the single-payer [health care system] is not going to get even to first base in the Congress.”  A single-payer health care system is not the only way to achieve the right to health care in the U.S., but is it acceptable that this option is taken off the table from the start?

Amnesty International has echoed the Montana movement and has called on reformers in a petition based on the work of the Health Care is a Human Right Coalition. The Coalition, which includes Amnesty International, National Social and Economic Rights Initiative (NESRI), the National Health Law Program (NHeLP), and the Opportunity Agenda, seeks to promote health care as “a human right, not a commodity.” The Amnesty petition states, “Gap in the health care system should be eliminated so that all communities, rich and poor, have access to comprehensive, quality treatment and services. Publicly financed and administered health care should be expanded as the strongest vehicle for making health care accessible and accountable.” Both this petition and the activism in Montana are critical steps in challenging our current health care systems across the country.

We in the health and human rights community should stand with this reform activism, with the hope that health care can one day soon be seen as right, rather than a privilege.

See also,

Download the Amnesty International Petition here

Video Series: Human Right to Health Care in Montana

Montanans for Single-Payer

Video: NESRI Executive Director Cathy Albisa at Amnesty International USA Annual General Meeting – March 28, 2009 on a panel entitled “Health Care is a Human Right: Realizing the Right to Health in the United States”

NESRI: Fact Sheets and Publications (scroll to Human Right to Health)