As the nationwide crisis in the housing and credit markets unfolds, a community-based coalition of health care and social service providers, affordable housing developers, and community organizers convened on October 10, 2008 to highlight human rights-based solutions to the crisis in one of America’s hardest-hit communities, South Los Angeles.

Read and hear coverage of this report from 89.3 KPCC, NPR Radio in Los Angeles!

Their call to action, Taming the Perfect Storm, is a unique, ambitious, and pragmatic example of “Health and Human Rights in Practice.”  Beginning with the recognition that fundamental rights for individuals who are either homeless or at-risk for homelessness are not being fulfilled by the nation these residents call home, this collaborative report uses a human rights framework to its full advantage.  The report moves from a broad understanding and comprehensive analysis of the problems faced by residents of South Los Angeles to specific recommendations to address the health – and human rights – needs of a vulnerable population.

The methods used in this report – analysis of interactions between local laws, economic policy, policing efforts, and other social determinants of health; extensive interviews and ethnography listening deeply to those in need; and clear recommendations based on a human rights approach – can be used by communities anywhere.

We hope you will read the full report (by clicking on the cover above), not only for what it specifically reveals but also for the methods and analytic approach used by the South Los Angeles Homelessness Prevention and Intervention Collaborative.  This model can be used to understand and begin to address a wide range of problems, wherever human rights are a concern.  As stated in the report, “Combining the treetops of international declarations and human rights law with grassroots advocacy and know-how, a South Los Angeles Human Rights Approach to Health can be transformative.”

We would like to draw particular attention to a novel advocacy tool, the South Los Angeles Declaration of Health and Human Rights.  It is exciting to imagine human rights declarations coming from communities around the United States – indeed around the world – as they will come from South Los Angeles.

Rishi Manchanda, MD, MPH and Evan Lyon, MD

From the Executive Summary

This report is the product of a unique South Los Angeles-based coalition of health service providers, community health workers/promotoras, tenant organizers, and affordable housing and civil rights advocates. The complex problem of homelessness and poor health in South Los Angeles is shaped by key local housing, health and law enforcement policies and conditions, some of which we have identified in prior work and continue to address.

Service providers, organizers and advocates in our collaborative have all witnessed the deleterious health and human rights impact of a recent series of public ordinances and law enforcement initiatives in South Los Angeles and Skid Row which disproportionately and often unjustly affect extremely poor and homeless persons. These programs have combined with other powerful trends, including the scarcity of local permanent supportive and affordable housing, the displacement of homeless and low-income residents due to gentrification downtown and along the Figueroa Corridor, evictions and the foreclosure crisis, the closing of Martin Luther King Jr.-Harbor Hospital, the historic underfunding of South Los Angeles community clinics by the Los Angeles County Department of Health Services, and the weakening of the local public health safety-net. Together, these forces have created a perfect storm for the homelessness and health crisis in South Los Angeles. Now, as the federal banking and credit crisis unfolds, South Los Angeles has become a bellwether for the nation, highlighting the fundamental challenges facing America’s increasingly stressed communities.

We conducted surveys of homeless individuals and service providers to document and define this perfect storm more clearly. Results from our work highlight the direct impact of damaging policies and trends on the health of homeless persons living in South Los Angeles.

Of the homeless persons we surveyed in South Los Angeles:

• Only 28% indicated that they had a usual source of medical care.
• 38% reported having a mental health condition.
• Nearly half (46%) reported a need for dental care in the past year. However, 59% of those who needed dental care did not receive it.
• 32% of those who reported receiving medical care at Martin Luther King Jr.-Harbor Hospital within the past two years indicated that the hospital’s closure decreased their ability to get medical care.
• An astonishing 42% of those who rented in the last five years became homeless because they were unable to afford a rent increase.
• Nearly 3 in 10 homeless individuals have experienced an eviction (27%).
• 1 out of every 3 (34%) homeless individuals reported having had an interaction with law enforcement in the past year.

This report from the South Los Angeles Homelessness Prevention and Intervention Collaborative (HPIC):

• Develops a common language to understand the health impact of current trends in housing availability, displacement, law enforcement policy, and health services in South Los Angeles
• Provides important evidence of the health needs and experiences of homeless individuals and service providers in South Los Angeles based on original community-based participatory research
• Offers a human rights approach to health to equip advocates, service providers, policymakers, and media to better address poor health and homelessness in South Los Angeles
• Offers specific recommendations to improve health and homelessness in South Los Angeles

(Note:  For a description of the specific policy recommendations contained in the report, please click here or on the cover image above.)

From Solutions, concluding “Taming the Perfect Storm”

The perfect storm of homelessness and poor health in South Los Angeles requires a powerful human right to health approach that can engender the broad-based support and political will necessary to implement long overdue, desperately needed solutions. Using this rights-based framework, we highlight key policy changes, outlined below, that target each major element of the perfect storm. These changes must occur if health and human rights are to be protected in South Los Angeles.

Shift the Policy Debate and Generate Political Will to Tame the Perfect Storm in South Los Angeles

Outlining policy prescriptives alone is not sufficient for the pressing task of preserving and restoring a healthy community in South Los Angeles. If we hope to leverage our voices to implement these policies effectively and equitably, our collective approach to homelessness and poor health in South Los Angeles will require a catalyst to shift the policy debate.

Adopt a Human Rights Approach to Health

As our community of service providers, advocates, policymakers and patients begins to understand the determinants of health and homelessness outlined in this report, the human rights approach to health described in this report offers a powerful method to turn awareness into political will and take specific, much-needed action. Combining the treetops of international declarations and human rights law with grassroots advocacy and know-how, a South Los Angeles Human Rights Approach to Health can be transformative. Such an approach demands that stakeholders shatter stereotyped, dehumanizing views of poor and homeless persons and unproductive and unhealthy silo-based approaches and, in their place, construct sound health, housing and law enforcement policies that respect our shared rights and responsibilities.

Share and use a common language

Innovative and powerful strategies to accelerate current efforts to tame the perfect storm of homelessness and poor health in South Los Angeles are required. Our collaborative believes that the first step of any local strategy involves the building of a common language among varied South Los Angeles constituents. As outlined earlier in our report, providers, patients, policymakers, and advocates can begin by using the vocabulary of “social determinants of health” to address the economic and social conditions which determine health in South Los Angeles.

The South Los Angeles Declaration of Health and Human Rights

We propose that one of the first grassroots advocacy efforts of the Human Rights to Health Approach be the development of the South Los Angeles Declaration of Health and Human Rights. Loosely adapted from the Universal Declaration of Human Rights, we envision that the South Los Angeles version will be developed in a participatory process, informed by patient and client experiences and endorsed by local service providers, advocates, and policymakers. This process will help build a broad coalition to address homelessness and health in South Los Angeles and generate needed fresh political will, media attention, and broader support.

Conclusion

In the nation as a whole, persistent widespread homelessness and the health care crisis offer compelling evidence of a collective disregard for human rights. Few places exhibit the ill effects of this disregard like South Los Angeles. Conversely, no other community stands to benefit as much from a community-based human rights approach to health. With a firm understanding of the links between critical determinants of health like housing, public and community health resources, and law enforcement policy, we commit to build the political will and skills needed to tame this perfect storm of homelessness and poor health. In short, we commit to reclaim and redefine our community guided by the practical application of fundamental human rights principles. As an important stage of community dialogue on the right to health, housing, and security begins, we welcome all constructive comments and critiques of this report.

On September 17, 2008, Health and Human Rights: An International Journal celebrated its recent re-release as an open access publication with a panel discussion on “Creating on Open Forum to Advance Global Health and Social Justice.” The panel included Dr. Paul Farmer, Editor-in-chief; Dr. Jim Kim, Publisher and Director of the François-Xavier Bagnoud Center for Health and Human Rights at the Harvard School of Public Health which funds the journal; Dr. Agnès Binagwaho, Executive Secretary of Rwanda’s National AIDS Commission; Dr. Gavin Yamey, Senior Editor of PLoS Medicine; and Philip Alston, the John Norton Pomeroy Professor of Law and Director of the Center for Human Rights and Global Justice at New York University School of Law.

In his opening remarks, Dr. Kim challenged the audience to extend their rights-based framework beyond just conceptual clarity and advocacy to the level of implementation, noting that “effective programs are needed to ensure the human right to health.”

Dr. Binagwaho took the stage first and spoke of how Rwanda’s history, and particularly the role of state-controlled radio stations in the genocide, had demonstrated that the right to information was critical to protecting individuals. The Rwandan government sees information and communication technology as a top priority, and is working tirelessly to increase internet access nationally and achieve the goal of one laptop per child. This priority was clearly illustrated by the topic of last week’s Compton Lecture given at the Massachusetts Institute of Technology by His Excellency Paul Kagame, President of the Republic of Rwanda entitled Imperative of Science and Technology in Accelerating African and Rwandan Development.

Dr. Binagwaho reflected on the irony of research done in developing countries that is never available to the study subjects, and she applauded efforts like PLoS Medicine and Health and Human Rights for working to promote access to a wider audience. In addition, she stressed the need for intellectual exchange. She saw these discussions as “necessary to make the best decisions.” Citing the example of GHDonline.org, she told of the value for herself and others in executive positions to bounce ideas off of each other (for example, should children of HIV-positive parents undergo mandatory testing?) and also the value gained by including field workers in the conversation. “People at the community level may not have the theories, but they have the knowledge,” she said. Finally, she outlined that the sum of these efforts, of fighting for access to health, information, and education, is to eliminate poverty.

Dr. Yamey focused on the need to change the way we look at medical publications. He pointed out that information is so expensive to access that patients, and many doctors and researchers, simply cannot afford to survey the literature and make fully informed decisions. “Only a tiny fraction of the intended audience can read a work. This paradigm is wrong — medical research should be a global public good.” The consequences of the current model are hazardous: often, doctors and patients are forced to rely on abstracts, which convey “dangerous half-truths.” Also, because researchers in the global south often have less access to literature than their counterparts in the north, a dynamic of inequality is introduced in their interactions. The world would benefit from a “knowledge commons,” which would better allow research and practice efforts to “build on the shoulders of giants.” Dr. Yamey was instrumental in getting the journal online in an open access format, and he applauded the journal’s new format.

Tracing the history of the human rights movement, Mr. Alston reflected that the discourse had been dominated by lawyers, resulting in a legal focus that often failed to garner enthusiasm or trust among social advocates. While the civil and political aspects are critical, Mr. Alston emphasized the need to link that with the right to health. He also challenged the journal not to let its focus waver from what he considered the ultimate task at hand: making the case for the right to health. “Until we confront the right of every individual to health and health care, then we are not looking at the central concern, and we are failing to achieve our objectives.” Changing the political dynamics and infusing society with a sense of moral outrage about violations of the right to health were objectives that he also lay out for the human rights community.

Dr. Farmer described his relationship with human rights as a “voyage,” and credited Haiti for being his greatest teacher. It was in conversations with his Haitian friends and colleagues almost 20 years ago that he saw a divergence between the goals and values of the academic community and those who did not enjoy their basic human rights. He observed “the limited faith of the poor in the non-poor’s promise to protect their interests, including health, housing, and food.” This rift, along with others between legal frameworks and social advocates as outlined by Mr. Alston, needs mending and harmonization. Citing an example of Russian prisons fighting TB epidemics and outcries that prisoners were starving to death, he said that “it is of utmost importance to get the diagnosis right in human rights. It determines whether we apply the right treatment.” His hope for the journal is that it will bring the discourses together in an “honest way,” and he was excited about the new format, adding, “The internet provides an opportunity to push through an agenda that is pro-poor.”

A reception in honor of Dr. Jonathan Mann, founder of the journal, concluded the event. Two of his children, along with Drs. Kim and Farmer, both of whom knew Dr. Mann very well as an early supporter of Partners In Health, shared some of their memories and told of his influence on their lives and that of many more, adding that he would be thrilled with the new direction the journal is taking.

Olga Shevchenko and Renée C. Fox write:

From the inception of our joint fieldwork in Moscow, and throughout the drafting of this article based upon it, we repeatedly said to one another, “I couldn’t have done this without you!” More than our reciprocal enjoyment in working together was expressed in this recurrent exclamation. It also contained our mutual recognition and appreciation of the distinctive contribution that each of us made to the participant observation, interviewing, the acquisition of primary and secondary documents, and the analysis and interpretation of the data collected by these methods.

Above: The authors, Olga Shevchenko (l) and Renée C. Fox (r)

On the very first day that we crossed the threshold of MSF-B’s office in Moscow, the “national” employees identified Olga (on the left in the photo) as a fellow Russian. They immediately drew her aside and began to spontaneously talk with her — in Russian — about the phenomena and issues they thought we ought to investigate, singling out the relations between “nationals” and “expatriates” for special attention; and they presented themselves to her as persons who were especially qualified to provide the information and understanding about MSF in Russia that, in their opinion, we should be seeking. We would not have been alerted so quickly to what became the central topic of our paper without this encounter, which occurred primarily because Olga herself is Russian. Nor would we have become privy to as many of the “backstage” office conversations that took place among the Russian employees if Olga, as well as Renée (on the right in the photo), had been American. It is also possible that our informants were more disposed to share their critical perspective on the “national”/“expatriate” dilemmas in MSF with us because they viewed Olga as a member of a two-person, cross-national team (with Renée) that was functioning on a harmonious, co-equal, collaborative basis. On a more macro-level, it was Olga who had the background to sociologically locate and connect the phenomena we were observing within the larger sociopolitical context of contemporary Russian society. She brought to the situation the knowledge and insights that she had gained through the ethnographic fieldwork she had been conducting in Russia, since 1998, on the postsocialist transformation that Russian society has been undergoing, with all the economic, political, and cultural quandaries that have accompanied these momentous changes.

At the same time, the open and hospitable reception that we received in MSF-B’s Moscow office from the outset of our research was partly attributable to Renée. She was not only well acquainted with MSF, but also well known within it, because of the first-hand sociological research about MSF in which she had been engaged since 1993 — on their medical humanitarian and human rights witnessing action; its underlying ideology and value-commitments; the moral dilemmas that it poses; and its intended and unintended consequences. Furthermore, she had a national reputation in Belgium that resulted from her more than 40 year-long relationship to that country. The sociological study of medical research in Belgium that she initially undertook there, which progressively developed into a more encompassing study of Belgian society and culture, had resulted in the publication of articles and a book that had achieved some renown in that small country. These factors facilitated the entrée that we were given by the Belgian and other European “expatriates” into the MSF-B Moscow office, and its projects. Furthermore, Renée’s involvement in Belgium had transported her to Central Africa where, primarily in the (ex-Belgian) Congo, from 1962 to 1967, she was intensively involved in other ethnographic research. This helped us to decipher the tendency of MSF members (in their “La Mancha” process of self-examination) to associate what they identified as their unjust treatment of “nationals” with attitudes and behavior that had been carried over from “colonialism” in Africa.

These are some of the complementary background factors, experiences, and competencies that, individually and collaboratively, we brought to bear on the fieldwork underlying this article, and the conclusions that we drew from it. However, our inquiry would not have been feasible without another crucial component: the fundamental, principled openness of MSF to in situ research like ours, which they regard as compatible with, and potentially helpful to their action. They consider it to be relevant to their “culture of debate” — in which they take pride — that is centered around their conviction that “ideas matter for action.” It seems fitting, then, to conclude these reflections by saying, “We couldn’t have done it without them.”

Gavin Yamey writes:

Something profoundly important has happened to the journal you are reading. For a start, you no longer have to pay a subscription to read it, which means that anyone in the world who can access the Internet will be able to benefit from its scholarship. The journal will, as a result, reach new audiences: patients, non-governmental organizations, teachers, students, health policymakers, and others. What’s more, the articles are now published under a progressive publishing license, called a Creative Commons license, that allows anyone to distribute them freely, translate them, and create derivative works (provided the authors are given credit and the work is cited properly). These two crucial features—the global freedom to read and to reuse the materials—define Health and Human Rights as an “open access journal” and will, I predict, have an extraordinary effect upon its reach, influence, and impact.

In an article that I’ve written for the first open access issue of Health and Human Rights, I discuss how the journal has now joined an exciting grassroots revolution, a revolution that some people feel will be as influential as the “green movement” of the last few decades. It’s a revolution to create a “knowledge commons,” a body of knowledge that the public is free to use and to build upon. As I mention in my article, this commons will be an extraordinary tool for, among other things, improving global public health, managing environmental challenges, and even promoting more democratic forms of government.

As an editor working at the Public Library of Science, I’ve long believed that every single published research paper in science and medicine should be freely and publicly available. PLoS editors often get accused of being too “radical” for having this vision, but the arrival of the Internet made this vision completely achievable. The editors of PLoS Medicine have previously argued that the Internet provides the means to revolutionize publishing in two crucial ways. First, it makes it possible to disseminate health and science information at no charge to anyone in the world with online access. Second, because the Internet allows not just ease of access but ease of reuse (I can, for example, send an article to a thousand people in just seconds), an article’s usefulness is limited only by a user’s imagination.

So what is getting in the way of achieving a truly public digital library of science and medicine? Well, like all revolutions, this one is facing resistance from organizations with a powerful vested interest in maintaining the status quo. In a recent New Yorker article about the search engine Google, this resistance was succinctly described by Ken Auletta. Making information universally accessible, wrote Auletta, is “an ambitious goal that often clashes with those whose business is to own and distribute it.” Traditional scientific and medical publishers have made it their business to own and sell research articles, and have become exceedingly rich in the process. A typical journal article costs $25-50 to read—the picture below, for example, shows that unless your institution has a subscription to the journal Library Management, the paper on “Impediments to promoting access to global knowledge in sub-Saharan Africa” will, ironically, cost you $35.50.

Fortunately, the momentum behind the open access movement—including huge support from research funding agencies, governments, patient advocacy groups, universities, and others—is proving to strong to hold back. To give just one example of this unstoppable force, President George Bush signed a bill into law on December 26 2007 mandating NIH researchers to deposit a full text version of their research papers in the NIH’s PubMed Central database, making them publicly available within a year after publication.

It’s incredibly exciting to me to watch the explosion of the knowledge commons, and to see the possibilities that it generates. Almost every day I read about new ways in which this commons could be used. Just a few of the recent projects that have caught my attention are the Cape Town Open Education Declaration, an effort to make learning and teaching materials available to everyone online, regardless of income or geographic location, and the People’s Open Access Education Initiative, which aims “to build public health capacity in low- to middle-income countries, using open education resources freely available on the Internet.”

For the health and human rights community, the knowledge commons could play a crucial role in the worldwide promotion and protection of health as a human right, and even in monitoring or highlighting health-related human rights abuses. As I argue in my article, this commons could, among other things, “provide researchers, clinicians, and activists with unfettered access to the data that they need to support their human rights work. It could become a rich public venue for sharing research and policy data, global analysis, discussion, and debate, case reports, and experiences from the field.” I’m looking forward to watching this commons evolve.