healthcare

Cover Me: A Health Insurance Memoir

mandy — Wed, 15 Sep 2010 10:00:00 +0000

If you suspect that your experiences alone put the hell in healthcare, then Cover Me by Sonya Huber is the memoir for you. By the age of thirty-three, Huber had already endured eleven gaps in healthcare coverage, and had also been sent to collections for medical debt multiple times. She became an expert at scavenging for alternatives and at squeezing every drop of blood from the recalcitrant turnip that is the US healthcare system.

Cover Me is a moving portrait of how access to healthcare determines who is a “have” and who a “have not” and in Huber’s hands, the issues surrounding healthcare reform become clear and relatable. Improbably, given the toll the struggles exact, the author is also very funny, telling her stressful tale with an irrepressible sense of humor.

Huber began her adult employment journey as an idealistic labor activist and became a university professor. At one point, she held down three jobs at once, none of which offered healthcare benefits. The pressure to find affordable healthcare ballooned exponentially as Huber went from single working woman, to wedding a man who was also a healthcare "have not," to becoming a mother.

But even as a single woman, the challenge of good health was daunting. Diagnosed with a disabling panic disorder, Huber was forced to scrounge for low cost medical clinics and sliding scale arrangements, at one point even bartering office cleaning services for therapy. She was often left to rely on two of the universe’s most unstable forces: luck and the kindness of others. At times, sympathetic doctors offered free pharmaceutical samples and dentists forgave their fees. But there were consequences, many of which could be filed under “you get what you pay for,” or more accurately, “you get what you are able to pay for.”

As a wife and mother, Huber’s determination grew even grittier. Schlepping her infant son through the frozen Ohio tundra to register for WIC and Medicaid benefits, and expertly working the phones to correct inevitable and near catastrophic bureaucratic errors, Huber became a master of resourcefulness and tenacity. Even during a rare stretch when Huber had coverage through an HMO, she found it to be Dungeons-and-Dragons-esque, requiring the right "passwords" to gain entry. (The passwords being properly worded referrals and appeals, and an intimate familiarity with the policy’s fine print.) If it’s true that insurance companies spew gobbledygook and denials to weed out folks who lack perseverance, they never counted on someone like Huber.

Huber’s Odyssean journey through the American healthcare system throws the institution's inequities and ironies into stark relief. She describes working for a nonprofit whose mission is to provide low income workers with health insurance; however, in a stunning revelation of either outrageous hypocrisy or business-as-usual in fund-strapped nonprofits, that same organization was unwilling to provide Huber with healthcare coverage. Meanwhile, Huber’s boss, who had stellar insurance through her prominent surgeon husband, could brandish her benefits card and blithely obtain top care. Reading this, you will be tempted to hurl the book against the nearest wall, but you won’t because you’ll be too riveted to let go.

Huber’s story will resonate with anyone who has ever battled a medical bureaucracy. That is, with everybody in America. Her refusal to say “uncle” will inspire, and along the way, readers may even pick up invaluable tips on navigating the labyrinthine depths of both public and private healthcare. There is also a twist at the end that makes university bureaucracy even scarier than its medical counterpart.

One question nagged me throughout Cover Me: where is Huber’s husband? He seemed to hang back and let Huber take the front lines, a story known to too many wives and mothers. But that question aside, and because Huber is such a deliciously skilled writer, Cover Me is the best kind of memoir; it is engaging, enraging, tragic and funny. Fortunately, laughter as medicine is one thing the insurance companies have not yet managed to deny.

Written by: T. Tamara Weinstein, September 15th 2010

Forced to Care: Coercion and Caregiving in America

admin — Sat, 10 Jul 2010 08:00:00 +0000

By Evelyn Nakano Glenn

Harvard University Press

Evelyn Nakano Glenn is a professor of Women’s and Ethnic Studies at University of California, Berkeley and author of Forced to Care. Perhaps because of her vocation, the book has a bit of a textbook flavor to it, but as it progresses, she lets go and begins to fill it out with a more humanistic view.

Forced to Care begins with a look at those who are responsible for the lion’s share of caregiving in America. Glenn’s findings basically confirm what most of us know already: in most cases, women of color, women at the low end of the socioeconomic scale, and illegal immigrants are the ones caring for our nation’s young, disabled, and elderly.

The author then takes her inquiries one step further by tracing the roots of caregiving back to colonial America in an effort to discover why such a disproportionate amount of paid and unpaid caretaking falls to these individuals. Glenn does a terrific job of leading the reader through the individual events that occurred politically, socially, industrially, and economically to reinforce the notion that it is a woman’s duty to take care of needy family members. Following the shift from an agricultural, self-sustaining, family-based society to a market economy, Glenn shows just why gender divisions still remain with respect to these types of jobs. She illustrates, through the use of an amazing amount of research, just exactly how American women with very few other choices have been coerced into providing care for others to the detriment of their own needs for centuries. Our society’s continued devaluation of these kinds of “homemaking” services serves to perpetuate the problem.

It is clear that the author encourages a sea change with respect to both paid and unpaid caregiving, but she refrains from demonizing any particular groups or individuals, instead offering a clear, concise look at how we got ourselves here, and why we need to get out of this mess while we still can.

Glenn advocates for both care providers and those receiving care and uses her vast knowledge of the history and foundation of the problems to offer concrete solutions to the difficulties both face as our aging society pushes us closer to a crisis in the fastest growing segment of healthcare in America.

Before picking up this book, I was nearly certain that I would be called upon to care for elderly family members at some point in my life, although hopefully not until my children are grown and gone. Despite my fears of being able to do so with grace and love versus resentment and frustration, it was nonetheless something I didn’t see a way out of. I can’t say that Forced to Care allayed my fears in any way, but I gained a tremendous amount of insight as to how and why I might be called upon to provide such care and how, if I am so inclined, I might join in efforts to increase the availability of resources and respect for caregivers as a whole.

While the book is not an easy read—I didn't settle down with it in my lounge chair next to the pool—it is an absolutely eye-opening look at something many of us take for granted; that we as women will eventually be called upon to care for those family members who cannot do it for themselves.

Written by: Kari O’Driscoll, July 10th 2010

subCITY: Out of Sight. Out of Mind.

admin — Wed, 10 Mar 2010 16:59:00 +0000

Directed by Kevin D'Haeze

Firefly Studios

In less than forty-five minutes, subCITY will shatter any notions you may have about access to mental health care in the United States, in Oregon in particular, the state where I live. Working for a mental health advocacy group, I'm reminded daily that the system is broken. But I didn't realize just how broken until I watched this film.

The director/producer team of Kevin and Dawn D'Haeze has created a powerful indictment of our current mental health care system. Tracing our currently underfunded system back to the early 1980s, subCITY shows how initiatives launched by former President Reagan have left a painful legacy for states like Oregon, which now has more people with mental illness in its correctional system than in its mental health hospitals.

Soon after taking office in 1981, Reagan rescinded the Community Mental Health Systems Act, slashing federal funding and placing the burden of cost for community mental health care on states. At the same time, Congress launched parallel initiatives, such as the War on Drugs, which created the rise of the prison industrial complex. The result? The combination of less funding for community mental health care and increased penalties for nonviolent drug crimes has put more people with mental illness in jails and prisons instead of allowing them access to treatment.

Does this make fiscal sense? No. But as Oregon State Representative Chris Garrett notes in the film, ballot measures and other moves to be “tough on crime” don't offer alternatives to incarceration. This sucks up funding, leaving less and less for community mental health care. This is in spite of the fact that this kind of care is far less costly than prison, and far less of a drain on the law enforcement agencies that are increasingly relied upon to “take care of” people with mental illness who end up on the streets.

Beyond proving their point with statistics, the filmmakers have candid and heartbreaking interviews with people whom the system has chewed up and spit out. They also speak with the counselors, police officers, and other community members who are trying to help them. More than anything, subCITY is a call to action. So do what the film intends by watching subCITY in its entirety on the web. Then visit the “take action” section of the film's website, which provides tips on how you can make a difference on this issue that affects us all.

Written by: M.L. Madison, March 10th 2010

Infectious Ideas: U.S. Political Responses to the AIDS Crisis

admin — Wed, 10 Feb 2010 01:00:00 +0000

By Jennifer Brier

The University of North Carolina Press

From the early appearance of AIDS as deviant in conservative America in the early 1980s to a full blown global battle in the 2000s, Infectious Ideas charts the activism behind the disease and how it never once wasn’t a political problem. What readers will learn with this book is that knowledge of the disease evolved alongside activist work. The origin, treatment, and likely victims of AIDS were all unknown in the early ‘80s when gay men and Haitian immigrants began to contract HIV. As a result societal scapegoating occurred and the government all but ignored the problem. Despite this, Brier shows how gay men unified to change habits, start dialogues about safe sex, and change public health policy.

With little or no experience in the health field, many early activist groups looked to the gay liberation movement of the 1970s for inspiration. As a result, racial and class discrepancies appeared as activist researchers began to realize that the highest at-risk groups were poor men of color who didn’t necessarily identify with the gay and lesbian community. San Fransisco activists worked to overcome what Brier calls “imperialism of expertise” by changing their campaigns to appeal to Latino and Black communities. Altering their way of thinking of how AIDS affects people proved vital for the moment and future efforts of global activists.

While modifying their approaches, American activists were also fighting another battle. Until the late 1980s they were essentially doing what the federal government should have been doing: informing people, promoting healthy prevention habits and working towards a treatment. However, ideological differences with the Reagan administration kept them from gaining governmental support. Instead of listening to activists with four years experience fighting the disease, the government was persuaded by internal politicians who didn’t condone condoms but rather (shockingly) chastity, fidelity and sex within marriage.

Brier positively notes that the lack of governmental support allowed for other groups to grow in more innovative arenas. She credits the Ford Foundation with raising awareness that AIDS was not simply a disease affecting gay and immigrants populations, but one that affected impoverished women in developing countries. During the late 1980s and early 1990s, the Ford Foundation focused on efforts in Brazil, Haiti, Thailand and Africa. They maintained a clear mission to “make woman’s rights human rights”. Three of the four countries that received the most funding saw significant drops in the number of new cases of AIDS.

The foundation's work strengthened the relationship between the Northern, developed world and the Southern, impoverished one. It also showed that attention to women’s rights, fighting poverty, and facing health issues overall is the most effective approach to prevent the spread of AIDS. As research continued to find medication to treat the disease, activists in the United States began to fight large pharmaceutical companies for affordable access to treatment, most notably through the work of ACT UP. Eventually disbanding due to internal problems, the group had five short but potent years which completely changed the U.S. response to drug testing and availability of medication.

Brier provides a unique account of the initial social response to AIDS in the 1980s and how it often preceded any political answers—a trend that continued into the early 1990s and today. Her book shows how we have arrived to where we are today in the fight against AIDS and what we can learn from the battles of the past.

Written by: Sara Custer, February 9th 2010

Briarpatch Magazine: The Gender & Sexuality Issue (March/April 2009)

admin — Mon, 07 Sep 2009 00:41:00 +0000

Edited by Dave Mitchell

At first glance, Canada's Briarpatch Magazine reminded me of American feminist magazine Bitch; the content is similar, the overall message is similar, and, hell, even the font in the logo seems similar. What I love about Bitch is that although it’s an American magazine, it covers issues from all over the world, so I can keep up on feminist issues all over just by checking in one place. Briarpatch does not cover such a distance, as it seems to be primarily a Canadian-focused magazine; however, I still learned a lot about some of Canada’s different subcultures.

This issue was billed as “the gender and sexuality issue,” so the topics covered were about polyamory, sex working and transsexual issues. First, I learned about Canada’s health care system in relation to transsexuals undergoing or wanting to undergo gender reassignment surgery. Unlike the United States, Canada has a government-funded health care system. It is apparently extremely difficult to get coverage for something such as this type of surgery. This was an interesting, in depth look at one man’s personal journey through this ordeal. It was inspiring, yet also sad with the hoops he had to jump through in order to become the gender he felt comfortable with.

Briarpatch also educated me about sex workers in Canada through an interview with Kara Gillies, co-founder of both the Canadian Guild for Erotic Labour and the former Toronto Migrant Sex Workers Advocacy Group. Gillies also does work for Maggie’s, an organization run by sex workers. Maggie’s includes all aspects of sex work in their attempts to advocate for these workers’ rights, such as individuals involved in pornography, phone sex workers, and dominatrixes, to name a few. It is Gillies' work with Maggie’s that is the primary focus of the article.

The most interesting thing I learned from this was that in Canada, the act of prostitution itself is actually not illegal and never was. What is illegal is negotiating for services in a public place or even somewhere that’s open to public viewing such as parked or moving cars or bars. So it’s fine to go and do the deed elsewhere but not to discuss anything such as protection, payment, or even specific services beforehand if it’s in a public area. But you also can’t technically go anywhere because your work site, if used for this purpose, could be classified as a ‘bawdy house’ and under the bawdy house law, that’s illegal too. In addition, if you participate in someone else’s activities, it falls under the procurement law. This means that you can’t do such things as advertise someone else’s services or even offer to protect them personally. But, again, the actual act of prostitution is totally legal!

This, too, was an inspiring although frustrating piece because while some of the facts were new to me, unfortunately, the overall story and public perception seems to be the same all over. On the whole, I enjoyed getting an in-depth look on another country’s struggles with the same issues as are faced in the United States, and Briarpatch was a very enjoyable read.

Written by: Jen Klee, September 6th 2009

La Americana

admin — Thu, 27 Aug 2009 17:34:00 +0000

Directed by Nicholas Bruckman

People's Television

This review will probably be a bit dated, as Nicholas Bruckman’s 2008 documentary appealing for more welcoming U.S. immigration policy has been superseded by our new president’s openly liberal views on the issue. However, La Americana still manages to be refreshing, ambitious, and important, particularly for those who are still skeptical of Obama’s stance or who simply don’t know much about the immigrant experience.

Bruckman makes a valiant effort to de-generalize the issue or, rather, the people it affects most, by focusing on one woman’s journey to the U.S. as an illegal immigrant from Bolivia. Her story is not the one to which we are accustomed: Maria does not come to New York in pursuit of some variation on “The American Dream;” she is only there in the hopes of making enough money to cover medical expenses for her daughter Carla, who was left paralyzed by a bus accident as a young girl. Ironically, Maria’s need to take care of her daughter ends up being somewhat of a detriment to their relationship, as it keeps them apart for several years.

For a film that’s bookended with two liberal quotes on immigration—the first by JFK and the second by Obama himself—La Americana is surprisingly unbiased in its presentation. Though Maria is a special case and certainly doesn’t represent all the illegal immigrants in New York City, let alone this country, her story is told in such an unadulterated manner that I wasn’t left feeling manipulated or like I was being pitched a political ideal.

It only helps that Maria herself is quite relatable and likable; she speaks candidly and without a speck of naïveté, so much so that even in spite of her situation, we never pity her. When she moves back to Bolivia on Carla’s quinceañera, we are finally able to see the awful living conditions her family endures there, but Maria never breathes a word of despair. She says nothing of how poor the available health care is there—we see it for ourselves, as she is forced to carry Carla up flights of stairs to the doctor’s office.

Unfortunately, the money Maria saved up in the States cannot sustain her and Carla for more than several months, and it is with a world of regret that she must move back to the U.S. It is at this point, at the end of the film, that we are reminded of Bruckman’s agenda, but not by Bruckman himself; it is Maria who pushes for change, eloquently expounding on what the term “American” means and what it should mean.

As I watched Maria tearfully explain that all Americans came from immigrants, I was surprised to realize that I’d never been allowed such emotional access to an illegal immigrant before. Bruckman has done something truly revolutionary by concentrating on this woman’s story: he’s personalized a group of people that has typically been pluralized and portrayed as a single mass, a collective “issue.” With the help of his film, perhaps those who still have trouble breaking that convention will at least begin to see illegal immigrants as people rather than a problem.

Written by: Caitlin Graham, August 27th 2009

The Blue Cotton Gown: A Midwife’s Memoir

admin — Wed, 17 Jun 2009 09:10:00 +0000

By Patricia Harman

Beacon Press

By the time Patricia Harman finished writing The Blue Cotton Gown, she was no longer working as a midwife. Instead, soaring malpractice fees had caused The Women’s Health Clinic of Torrington, West Virginia, a practice Harman runs with her husband, Dr. Tom Harman, to provide only general obstetrical and gynecological care to the patients it serves.

Harman is a nurse-practitioner and her memoir tracks a handful of women for approximately a year, zeroing in on the many variables that impact their health and well being: rampant drug and alcohol abuse, poverty, violence, mental illness, and inadequate information about staying healthy, among them. It’s a gripping account. At the same time, the book is as much a meditation on aging, marriage, and parenthood as it is a look at the obstacles and challenges endemic to the provision of healthcare in the U.S. This makes it both intensely moving and intensely, if obliquely, political.

Harman describes herself and her spouse as former hippies, people who found their professional calling in their thirties, after years of organic farming and communal living. Their countercultural impulses have made them compassionate, and their work is motivated by love of medicine, not love of the dollar. Not surprisingly, these tendencies have led to managerial problems. To whit, an inattention to finances—and way too much trust in accountants who could care less about the Harman’s ethos of providing the best care for the best price—led to monetary miscalculations that threatened to shutter the practice. When the IRS came calling, tensions built and the Harmans and their ten-person staff had to work tirelessly to forge a survival strategy. They did—the practice was saved—but not without both dents and dings to numerous personal relationships.

Meanwhile, they had patients to deal with and their own personal crises to address. Harman calls it “running in front of a plague of locusts.” There is Nila, pregnant for the eighth time, who fears that her ex-husband is molesting her four-year-old. There is Heather, a teenager pregnant by a nineteen-year-old drug addict, and Holly, a forty-five-year-old menopausal realtor whose bulimic daughter is perched on death’s window ledge. And there’s Rebba, worried because she has never had an orgasm, and Shiana, a college student who needs to have a condom extracted from behind her cervix.

Closer to home, the elderly parents of staff get sick and Harman, herself, becomes ill. Within the span of a few months she needs to have a gangrenous gall bladder removed and has a complete hysterectomy.

Throughout, there are constant money troubles—big ones—and the tension and stress are palpably presented. To her credit, Harman is not looking for either sympathy or accolades but her matter-of-fact descriptions of how difficult it is to provide high quality, patient-centered care is simultaneously enraging and shocking. While she never discusses the need for a national health plan—she also barely mentions abortion as an option for her oft-pregnant patients—her chronicle of the trials and tribulations of one nurse practitioner is riveting.

Yes, The Blue Cotton Gown could have been more politically prescriptive. Nonetheless, readers will find their immersion in the daily affairs of this off-the-beaten-track health center emotionally engaging, engrossing, and inspiring. Indeed, in an era of rampant medical discontent, the determination and persistence of Harman and her Torrington colleagues seems almost miraculous.

Written by: Eleanor J. Bader, June 17th 2009

Heart and Soul

admin — Wed, 03 Jun 2009 17:20:00 +0000

By Maeve Binchy

Knopf

As much as I'm addicted to hard news and biography, Maeve Binchy's novels are my guilty pleasure. If you're into this genre (think chick lit with substance) you won't be disappointed with Heart and Soul, the Irish novelist's latest book. Set in (where else?) Dublin, the book chronicles a year in the life of employees and patients of a new heart clinic.

Scrambling both for clinic funds and a smoother personal life, protagonist Clara Casey, a cardiologist, is one of Binchy's most feminist characters to date. She is also a well-drawn and likable one: successful but humble, compassionate yet hard as nails when she needs to be. Casey has given herself a year to succeed at what was at first an unwanted job, after being passed over for a more prestigious position. In the meantime, she hopes to sort out her difficult adult daughters, her nearly-ex-husband, and a budding romance with a boring man.

This book is actually full of strong, independent female characters of all ages, ranging from the young, hopeful immigrant who is hired to do chores at the office to the foreign language teacher who is skeptical about her husband's treatments at the clinic.

Fans will be delighted to see characters from several of Binchy's other books (Scarlet Feather, Quentins, Nights of Rain and Stars, Whitethorn Woods) return alongside new ones that are equally well-drawn. Then there's the delightful backdrop of Irish neighborhoods so cozy and intimate that everyone seems to know everyone.

Spoiler alert: My only gripe reading Heart and Soul is that Binchy, in her constant quest to reward her characters with happiness, sets the stage for a romantic dalliance with a couple of people who spend most of the book at each other's throats. And out of nowhere, they're dancing and he's asking her out? Hello!

Other than that, this is a fast read and a sweet escape from the daily grind. If you like Maeve, you will love this one.

Written by: M.L. Madison, June 3rd 2009

Worried Sick: A Prescription for Health in an Overtreated America

admin — Sat, 02 Aug 2008 12:43:00 +0000

By Norman Hadler

University of North Carolina Press

It is refreshing to see find a doctor who is willing to question the establishment. In Worried Sick, Dr. Norman Hadler begins with the observation that the national health-care plans of “advanced” countries (other than the United States) cost a quarter of what Americans spend on health insurance, their survival rates are higher, and their citizens have more years of a better quality life. Rather than focusing on extending life, he believes, we should focus on maximizing the possibility for high-quality life, with eighty-five years old being the aim for a ripe old age. Hadler believes life circumstances are often the reason people cannot cope with their medical issues and recommends making changes in work, family life, and self-care rather than turning immediately to medication or surgery.

Hadler takes readers through many common illnesses: heart disease, cholesterol, colon problems, bone fractures, and neuromuscular disorders. For each, he highlights the treatments commonly prescribed in America, many of which he considers ineffective, a waste of money, and perhaps a risk to one’s health. He reminds readers that certain aches and pains, a reduction in bone density, and other minor ailments are natural elements of aging. He tries to turn the dialogue away from “What is wrong with me?” and toward “Why am I unable to cope with this episode?”

The last two chapters are the strongest part of the book. Hadler lays out an intriguing proposal for a health-care plan in the United States. He suggests it be an employer-based plan, and even provides the possibility of a state-based plan, but he does not explain why it shouldn’t be national. In his plan, employers would contribute twelve percent of a worker's annual wage. One percent would go towards administrative costs, one percent toward profit, and the rest toward an indemnity plan. There would be a conflict of interest policy, and no one working for the plan would earn more than five times the plan’s average employee wage.

Worried Sick is a book worth keeping on the shelf to double check the risks and benefits of a doctor’s suggested treatment. The ideas in the book deserve a larger audience, and I hope Hadler will collaborate with a professional for his next book because the clumsy writing style and complicated phrasings results in important ideas being lost within the text and can dissuade the reader from continuing on. The proposed health plan also deserves discussion, but would generate more interest if presented in a more accessible form. Hopefully, the author’s next book will accomplish that.

Written by: Jessica Jacobson, August 2nd 2008

Patient Listening: A Doctor’s Guide

admin — Wed, 23 Jul 2008 11:44:00 +0000

By Loreen Herwaldt

University of Iowa Press

We talked for 45 minutes. It didn’t take much. You’re not asking them to be a guru, a Tibetan monk, a psychologist, or practice in a different field. Just ask one more question, two more questions. Somehow everything comes into place much quicker.

This patient’s story captures the meaning of this collection of prose by twenty-four writers who have extensive experiences as patients. Loreen Herwaldt is a physician and educator in Internal Medicine and Epidemiology at the University of Iowa who selected close to one hundred pieces in Patient Listening in order to help students and medical practitioners appreciate the importance of communication and listening in their service.

An introduction and additional section, along with responses from other professionals, orient educators and practitioners on how to use this book. Here, a section of prose by a patient summarizes the purpose of what follow, “Medical training is fantastically narrow and intensive. It has to be…I’m not saying doctors need to go to liberal arts college…but I think it would be important to get the patient’s point of view.”

The patients' experiences are negative and positive, sometimes both are heard from the same author. Some experience alienation, for example, while overhearing a teaching physician excitedly pegging her as “a great case” and telling students “[t]hey were going to have an opportunity to do things they didn’t normally do.” Another appreciates a statement made by a surgeon who suddenly gets that the two don't have a good rapport: “No, you’ve had enough trouble with your eyes, you’re not having trouble with your doctors as well.”

Patients also take responsibility for their own experiences: “I thought if I got really sick, people would pay attention.” Another woman, who had a bone marrow replacement, describes taking the advice of hospital staff: to put up a picture of herself when she was healthy, so friends would remember and other staff members would be more likely to treat her like a “normal” person. Another appreciative piece relates, “I could not imagine getting 87,000 phone calls the way my hematologist does and not being half crazy. But he’s not… When I see him he is incredibly focused… and he’s very compassionate."

On average, the prose in Patient Listening has a tone that is critical of patient-doctor relationships, but there are many positive examples interwoven. In short, this book would be helpful read for anyone in either of the “two classes” described by one author: the “healthy in white coats, calling the shots” and “the great cases.”

Written by: Heather Irvine, July 23rd 2008

Will to Live: AIDS Therapies and the Politics of Survival

admin — Sun, 15 Jun 2008 01:39:00 +0000

By João Biehl

Princeton University Press

Ethnographers, novelists, and prisoners write heart-wrenching books because they present simple truths. Will to Live is a powerful, at points searing ethnography of HIV antibody surveillance systems in Brazil and pharmaceutical industry influence in bringing forth new relations of politics and health care. It tells of the bodily suffering of Brazilians who contract, and eventually die from, AIDS - and of those who fear such diagnoses, although they are HIV antibody negative.

It demonstrates the varying degrees of access that Brazilians have to highly active antiretroviral therapies (HAART) and that track along the fault lines of social structure. That HAART works for many (but not others) or that it comes too late (or too early or is engaged too haltingly) signifies the contradictions and paradoxes of culture and social structure that are usually revealed in epidemics. Although it is filled with positive stories and better outcomes (HAART brings many back from the brink of death), Will to Live is as painful to read as Nancy Scheper-Hughes’ Death Without Weeping, also about Brazil but in context of infant mortality; Paul Farmer’s AIDS and Accusation, also about AIDS but set in Haiti; and Begonia Aretxaga’s Shattering Silence, about Northern Ireland women who deploy their incarcerated bodies and even bodily fluids in political protest.

Will to Live shows that the national and international response to HIV and AIDS has in Brazil “shifted from controlling the epidemic to controlling individualized disease.” “Yes,” the author writes, “distribution programs make antiretroviral therapies accessible, but they are one element in the full treatment of a disease that... remains a matter of a regional politics of nonintervention.” “It’s a shame what is happening to AIDS” is the direct utterance of an otherwise well-intended caregiver, suggesting just how much the cart has been put before the horse and what the public health costs can be of imagining only a pharmaceutical response.

João Biehl is a Brazilian anthropologist and Associate Professor of Anthropology at Princeton University who has a long time studied the conceptualization, implementation and evolution of the Brazilian AIDS Control Program (BACP). Multi-sited in location, multi-method in logistics, multi-voiced in narrative, and multi-purpose in scope, Will to Live unravels and critiques the ways in which NGOs (non-governmental organizations), churches, the Ministry of Health, pharmaceutical industry representatives, gender and sex work activists, and those suffering from HIV or AIDS mounted a “national” response to HIV and AIDS that is anything but. “A central concern of my ethnography,” the author notes, “has been to produce alternative epidemiological evidence and to generate some form of visibility and accountability for the abandoned subjects with AIDS.”

A site of Biehl’s particular focus is Caasah, a part-community house, part-hospice, part-pharmacy, part-training ground in advocacy. Caasah was formed in 1992, “when a group of homeless AIDS patients, former prostitutes, transvestites, and drug users squatted in an abandoned maternity ward in the outskirts of Salvador” and turned it into a care center. He returned to Caasah in 2001 to find a near-complete turnover there of patients and staff and a reorientation of service provision and funding source. As such, Caasah well represents both the protean nature of AIDS and the constraints upon and conditions under which local-level responses to it were mounted.

All but a very few pharmaceutical industry representatives, health authorities, and politicians talk in double-speak. Many exacerbated cleavage between rich and poor, politically visible and not:

As with all things political and economic, the reality underlying the AIDS policy is convoluted, dynamic, and filled with gaps. The politicians involved in the making of the AIDS policy were consciously engaged in projects to reform the relationship between the state and society, as well as the scope of governance, as Brazil molded itself to a global market economy. One of this book’s central arguments is that on the other side of the signifier _model policy _stands a new political economy of pharmaceuticals, with international and national particularities. As NGO activism converged with state policy making, and as the public health paradigm shifted from prevention to treatment access, political rights have moved toward biologically based rights.

Comprising eight chapters including Introduction and Conclusions, Will to Live is equally heavy and light, grim and hopeful, ethnographic and theoretical. The Introduction (“A New World of Health”) bookends painful personal stories and broadly sweeping discussion of the political-economy of pharmaceuticals. Rhetorical and other slippage in the overly optimistic assessments of AIDS bureaucrats and pharmaceutical representatives is revealed in stories of busted aid posts, iatrogenic illness, and social structures that sicken people. Chapter One (“Pharmaceutical Governance”) discusses the complexities of state-local, transnational-NGO and doctor-patient relations. Biehl writes perceptively about the successes of Brazil in manufacturing generic drugs that challenged patent rights granted by the WTO.

The particular successes and failures of Caasah are scattered in discussion throughout the book, but Chapter Two (“Circuits of Care”) looks intently at the new subjectivities (e.g., patient-citizen, “risk group” member, the “worried well”) that arise in social, technical and economic relations brought to bear by HIV, HIV antibody testing and AIDS. The failures of the surveillance system – but also its tremendous promise – are shown acutely in the next chapter, “A Hidden Epidemic,” which reveals the biases in public health and society at large with regards to surveillance, treatment and counseling. Chapter Five, “Patient-Citizenship,” examines the Phoenix-like rise from the ashes of imminent death that has been occasioned in many of those who have responded particularly well to HAART. Many have resumed reasonably normal sexual and political lives relatively free of the anxieties and technoneuroses brought on by the antiretrovirals themselves and the HIV antibody testing and counseling regime. The first section of Chapter Six, “Will to Live,” is appropriately titled “Lifelong AIDS,” for it reveals the stark contours of the limits and promises of a largely biomedical “fix” for what is clearly and also about sickness in the social-structure.

There is little for a reader about which to complain. A quotation is repeated and some Index entries are incorrect, but there are extremely few typos or grammatical infelicities. I want to highlight one particular kind of problem that mars Biehl’s presentation at many points, however. Biehl claims that “Epidemiological surveillance services registered the first HIV/AIDS cases in 1982.” This conflates HIV and AIDS, as he does ad infinitum, and HIV hadn’t yet been identified, either. It doesn’t excuse him to say that everyone else does, too - for real damage is done in such conflation, for example, that “HIVab+” means a death sentence and a rhetorical slide to “AIDS” to “contagious” to social leperhood.

Moreover, “AIDS” had not yet congealed into a biomedical category, either. This leads him at many, many points to confuse cause and effect, vector and pathogen, infection and antibody, for example, when he says that “the homosexual/bisexual mode of transmission accounted for less than thirty percent of the total number of AIDS infections.” Ontologically, epidemiological notions do no counting; epidemiologists do. Logically, “bisexual” mode of transmission (of HIV) has also to mean “heterosexual,” which then must be explained anew for its expanded and more complicated, often hidden properties. Empirically, the “total number of AIDS infections” would multiply the epidemiological categories of “HIV antibody positive” and “AIDS diagnoses” by at least five-fold if not twenty-fold, that is, in terms of pulmonary tuberculosis, cryptosporidium, toxoplasmosis, pneumocystis carinii pneumonia, persistent diarrhea, anaemia, and so on. As well, this undercuts the force of Biehl’s informants who rightly point to the endemic state of such infections and problems prior to the arrival of HIV and AIDS. Further, it suggests that these individual infections or pathogens are sexually transmitted and that there are characteristic differences along the lines of sexual identity (i.e., “heterosexual” transmission of this, “homosexual” transmission of that).

The lengthy discussion of subjectivity comprising Chapter Four is difficult to follow and jargony, although its theorization of “technoneurosis” (and elsewhere, of “auto-bioadministration”) is spot-on. Biehl argues from the standpoint of careful analyses of case studies that the “confused and painful experience of Oxygen [the pseudonym of a sick and anxious woman repeatedly testing HIVab negative] was somewhat technically engineered. This testing apparatus played a determinant role in the emergence of a socially visible imaginary AIDS.”

Nevertheless, this and other chapters exemplifies well the Foucaultian thesis that discourse about subjects (in this case, about the technical aspects of an HIV antibody test and about what constitutes “good” and “bad” sex) creates new subjects: the worried well, the sick and the anxious, the promiscuous and the guilt-ridden. The algorithm of HAART adherence is predictable on sociological grounds. “Failures” are on blamed on the individual, not the system; not the social structure; not the lack of housing, food, education, and employment. Nor was the HAART roll-out so universal and stable as its proponents claimed

Laid atop an already struggling public health system, Biehl found that “the universal availability of essential medicines has been subject to changing political winds; treatments are easily stopped, and people have to seek more specialized services in the private health sector or, as many put it, ‘die waiting in overcrowded public services.” The meaning of “primary care” has changed to mean selective targeting of those more likely to live, and triage has replaced universality as a metaphor of coverage. Clients become clinical trial subjects. Treatment trumps prevention. Risk becomes individualized instead of increasingly social. Infection becomes increasingly moral and subject to religious edict. HIV antibody test counselors compete with one another not to be the one to read the positive bands. Social scientific insights are swept aside.

This newest addition to Princeton University’s (In)Formation Series, edited by Paul Rabinow, is a sober but accessible and extremely humane text, just as well constructed as attractively presented. The black-and-white photographs taken by Torben Eskerod are arresting and invite commentary, speculation and, in my case, envy. Around this exciting new work could be wrapped all manner of upper-division or graduate-level courses in anthropology, public health, medicine and even political-economy. Like too many countries and cultures to count, ill-tempered politicians, cynical epidemiologists and overburdened healthcare workers in Brazil have contributed to an official portrait of HIV transmission dynamics, infectious burden and prevention efforts that often bears little resemblance to reality. Once again, the inequalities of social structure get off scot-free. This ethnography is a major contribution to social theory and justice.

Written by: Lawrence James Hammar, Ph.D., June 14th 2008

Protecting Women and Animals

admin — Sat, 20 Jan 2007 18:53:00 +0000

FemFatalities.com

As we enter into a year-and-a-half or so of political mayhem leading up to the Presidential election, we’re sure to hear a lot about top issues pertaining to women voters. Among them: healthcare. And while the issue of animal rights might not be specifically mentioned at the top of the list, it might as well be. After all, animal rights issues have a lot to do with healthcare—more specifically, women’s healthcare.

If you’re not sure about this, take a look at Fem_Fatalities_.com. A very credible, robust, and thorough site dedicated to protecting women and animals. Its content balances integrity with provocation. By that I mean that the editorial is direct and honest, and may be perceived by some as disturbing. Yet with the directness comes a high level of trust—trust that we can handle the truth and would be angered, disappointed even, by anything less.

On the home page, a spotlight on feminist icon Gloria Steinem who recently charged that the National Institute of Health is putting women’s health at risk by wasting tax dollars and conducting cruel and pointless animal testing.

The site also features various stories and investigations related to animal cruelty, campaign updates, ways to get involved, and a list of companies and charities that do and do not test on animals.

Adding to its credibility is the inclusion of high-grade video. Currently airing, a piece on primate torture at Columbia University as well as a PETA piece that is sure to make you think twice about buying certain brands of mascara. Be forewarned and enter these videos at your own risk. They’re not for the faint of heart. Of course, there’s nothing like a healthy dose of reality to affect change, and that is what Fem_Fatalities_.com is counting on.

It’s also counting on one very feminine trait: compassion. I mean, the thought that women were gaining at the expense of animals’ lives is heartbreaking. And, really, could there be anything more paradoxical?

A visit to this site is well worth the look. Not only is it an eye-opening experience, but it’s a way to stretch those feminist muscles, become active and help stop the cruelty.

Written by: Sharon R. Cole, January 20th 2007