OpenForum – a blog by the Health and Human Rights community

Six months into the administration of the United States’ first black president, the right-wing fringe has reclaimed the center of attention in US domestic politics, propelled by industry money and media interests. Health care reform happens to be the issue at stake, but any other issue would have served the purpose, as long as it guaranteed media coverage for right-wing fear-mongering and promoted the ongoing reframing of popular values (choice, security, people’s control) — mastered in the 1990s by Newt Gingrich — into Republican campaign slogans, spiked with racist undertones for good measure. In this context and to a backdrop of news about the return of militias — which kept a suspiciously low profile during the years of the Bush administration — I found the prospect of carrying out field research in Montana on the human right to health a little daunting. But reassuringly, Montana’s Human Right to Health Care campaign is run by an organization that is also Montana’s first and foremost expert in monitoring and fighting right-wing extremism: the Montana Human Rights Network.

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. Read more

Lately, media coverage of town hall meetings to discuss health reform have focused largely on the disruptions and protests occurring at them, overlooking much of the information lawmakers have attempted to convey to the public on the urgency and importance of reform. Public forums are important and serve a purpose, but given these disruptions and the violence (threatened, implied, and enacted) that have regularly occurred at recent town hall meetings, a new tactic may be in order. Press conferences such as the one I recently organized in Seattle, Washington, may be an underutilized approach in moving health care reform forward. A press conference allows public officials to make their points without disruptions intended to distract rather than inform. Here’s a sampling of what went on:

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.

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Colombia is a country marked by extreme social inequalities and high levels of violence, with a government that has brutally repressed social movements and dissidents, including health workers’ unions. Notwithstanding the repression, various social sectors have gone to enormous lengths to denounce violations of the right to health produced in the current health system. These groups have proposed ways to overcome barriers to access and even alternatives to the present health system, which is based on a managed care system devised by technocrats in the early 1990s. Nevertheless, in this context, the Colombian Constitutional Court (the Court) has played an extraordinarily activist role — unparalleled in any other country in the world — in promoting greater economic and social rights and the rights of minorities, and in placing some restraints upon the executive branch.

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.

[Editor's note: This is a guest post written by Maggie Sullivan. Her bio may be found at the end of the article.]

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?

Many medical professionals and politicians looking toward alternative methods of providing health care are finding examples of communities within the US and in the developing world that have been able to give quality care without skyrocketing costs.

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. Read more

Now that the President has officially designated the ongoing health care reform efforts as “health insurance reform,” we can stop the charade that this debate was ever about “care.” Or about health, for that matter. Oddly enough, the obsession with “coverage” – a potential mechanism to facilitate access to care – has not led to a serious consideration of the private insurance industry’s raison d’être, at least not beyond the community of single payer advocates whose voices are drowned in the constant drumbeat about a supposedly American – read: “market” – solution.

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. Read more

Even after the media reported that health insurer Blue Cross rewarded employees for canceling policies of individuals with serious illnesses, executives from the nation’s three largest health insurance companies refused to stop this practice, called rescission. Also known as post-claims underwriting, rescission occurs when insurers cancel a person’s coverage, often after that person has paid thousands of dollars in premiums. The practice is ostensibly a means of recourse for companies in instances of fraud, when an applicant has intentionally failed to disclose pre-existing conditions. However, insurance companies increasingly use it to cut costs by searching for insignificant or irrelevant errors on policyholder’s initial applications. Los Angeles Chief Assistant City Attorney Jeff Isaacs, part of the legal team fighting these practices, explains: “[The policy of rescissions] appears to have evolved into a cost-savings method. It’s a systematic, institutional process to flag and pull anything that looks costly to the company.”

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). Read more

Health care is a universal right, declare health care reform activists in Montana. If we recognize universal care as a right rather than as a private product, the activists contend, Americans across the country could gain fair and equitable care.

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.” Read more