Review of Paul Farmer's Pathologies of Power

AIDS struck down Acephie and the soldier quickly and remorselessly, but there were other victims as well: The soldier's wife, children, and numerous other girlfriends all contracted the virus, as did the baby Acephie gave birth to shortly before she died. And Acephie's father, still in the prime of life, hanged himself in shame over his daughter's dishonorable death.

It's a horrifying but commonplace scenario, according to Paul Farmer, author of ``Pathologies of Power.'' This book is Farmer's account of the Acephies of the world - the disenfranchised poor whose lives so often end in tragic and yet, he contended, wholly predictable ways. They are victims of `structural violence,'' falling prey to treatable illnesses, preventable hunger, and crime, all for the sole reason of having no money.

In the first half of the book, Farmer writes through the lens of his own experience as an infectious disease specialist. Haiti is the country he knows best and it is from there that he draws most of his examples, but he also has spent time in Cuba, Russia, Mexico, Peru, and Boston, where he is on staff at Brigham and Women's Hospital and on the faculty at Harvard Medical School.

From the hopeful successes of AIDS sanatoriums in Havana to the dismal state of tuberculosis-racked prisons in Siberia, Farmer documents what he and other public health workers have encountered in clinics and hospitals, as well as in prisons and backstreets around the world.

He contrasts a common ethical dilemma in Boston - whether to continue giving life support to a brain-dead patient - with an ethical dilemma in Haiti - whether to begin giving AIDS drugs to someone like Acephie if there is no guarantee of the clinic having a continuous supply of medications. Money, apparently, dictates not only the standards of care, but also how we have come to define the term ``medical ethics.''

In the second half of the book, Farmer addresses human-rights issues at length, offering suggestions for policy measures that might begin to heal the ailing public-health system. Change, it seems, will not come easy. Farmer argues that the incidence of disease among the world's poorest people is preordained by the very structure of today's ``free-trade'' markets, and that nothing short of systemic overhaul is needed. Capitalism, by definition, does not distribute goods or services equally, so ways must be found to allocate health care, education, and nutrition evenly, and among all people. These things, Farmer states, are not privileges, but basic human rights.

Farmer's indictments, especially in the latter half of the book, can be repetitive and heavy-handed. On the other hand, an unrelenting voice of protest is perhaps the only way to spur the largely complacent developed world into action.

What Farmer does most successfully in this book is pull the problem of justice in health care into unforgiving focus. ``Pathologies of Power'' is a cry for those whose own shouts go unheard. It is a bitter dose of medicine doled out on behalf of the nameless, faceless millions who have no medicines of their own.

Pathologies of Power: Health, Human Rights, and the New War on the Poor By Paul Farmer University of California Press, 419 pages, $27.50

The clinic was set up in 1985 to offer voluntary HIV testing and counseling. In the Journal of Acquired Immune Deficiency Syndromes, doctors describe how basic health care services were progressively added to the clinic's operations of the following 15-year period.

During this interval, the number of individuals counseled and tested for HIV annually rose from 142 in 1985 to 8175 in 1999, Dr. Warren D. Johnson Jr. from Weill Medical College of Cornell University in New York and colleagues report. In 1999, 30% of adults and 10% of children tested positive for HIV.

During 1999, more than one third of adults who came to the clinic and over half of those testing positive for HIV benefited from at least one of the primary care services (including HIV care, tuberculosis management, sexually transmitted infection management, and reproductive health services) offered by the clinic.

"While some view HIV care and HIV prevention as opposing programs vying for limited resources, we believe that prevention and care are synergistic and forged together will be a powerful weapon in the fight against AIDS in Haiti and in many other developing countries," say the authors of the article.

The clinic's efforts paid off in preventing sexual transmission of HIV. Many of the HIV-positive adults told a sexual partner to go for HIV testing and counseling. Of the 85 uninfected spouses who underwent repeated HIV testing, none had become positive during an average follow-up period of 18 months.

HIV-positive pregnant women were provided antiretroviral therapy to prevent infection of their infants. According to the report, only seven children became infected, representing an infection rate half that previously seen in Haiti.

"This report demonstrates the feasibility, demand, and effective synergy of integrated on-site primary care services and HIV VCT in Haiti," the team concludes.

SOURCE: Journal of Acquired Immune Deficiency Syndromes, August 1, 2003.

In the slum neighbourhood of Carrefour-Feuilles, in Port-au-Prince, Guerda Alexis's work is more than basic healthcare, and more than offering clinics for those who are ill and cannot afford medical fees. Some days she counsels people about to have tests for sexually transmitted diseases - or those those who have tested HIV-positive. Some days she runs workshops, providing life skills as well as food and multi-vitamins to improve people's abilities to live with their condition. Some days it is all of these tasks, which can be 'both good and sad', she says.

'It's good because women who come to the workshops depressed and with low self-esteem rediscover a sense of self-worth and a zest for living.'

But at the same time, Guerda knows that there is only so much she can do. 'Even with all the moral support, the food and the multi-vitamins, the women's immune systems continue to weaken and eventually they die.'

Economic factors help explain the spread of HIV in Haiti - women are often financially dependent on men and unable to set the terms on which they have sex. At the same time the government has invested little in public education - in remote areas people have never heard of HIV. Those who are not informed are more likely to contract the disease. Working in the community, Guerda runs campaigns to improve HIV/AIDS awareness and improve understanding of family planning, the importance of breast-feeding, and how to prevent other sexually transmitted diseases.

Not easy
With the support of Christian Aid, Guerda is aiming to relaunch a project enabling women to receive treatment from local doctors - treatment they would otherwise be unable to afford. And with additional funds for the social reintegration workshops, she will provide local women with much-needed food. 'This work is not easy,' she explains. 'It requires a lot of determination and courage. And one must have love for other people.'

The grant is the first made by the fund in Latin America and the Caribbean. The fund, based in Geneva, Switzerland, was established last year to mobilize public and private resources against three of the world's largest killers, supporting efforts to achieve the Millennium Development Goals.

The initiative will provide anti-retroviral therapy to more than 1,200 people living with HIV next year through a pioneering approach that enlists community members to help ensure the treatment regime is followed. It will also mount a large-scale awareness and prevention campaign to reach more than 400,000 youth, together with distribution of 15 million condoms.

Last year, 30,000 Haitians died from the disease, and an estimated 250,000 people, half of them women, are living with HIV -- about six per cent of those from age 15 to 49.

UNDP and the Fondation Sogebank, a private Haitian organization, will manage the programme, which includes 17 projects to be carried out by community groups and other partners. So far, the fund has allocated $24.7 million for the initiative's first two years.

"Haiti's long and difficult relationship with AIDS is made worse by deteriorating health and social care structures, a situation precipitated by the nation's two-year economic crisis," said Mildred Aristide, Haiti's First Lady and chairperson of the country coordinating mechanism for the fund, a partnership among government, civil society, the private sector, and international agencies.

The programme will help overcome many barriers to treatment, widen HIV testing, promote prevention and ultimately help reverse social conditions that facilitate the spread of HIV/AIDS, she said.

Haiti's programme embodies the "spirit of partnership that the Global Fund seeks to create," bringing together all sectors of society to ensure a more rapid and effective response to HIV/AIDS, said Richard Feachem, Executive Director of the fund.

UNDP will provide training for more than 15 civil society groups to help them carry out the projects and also assist the Fondation Sogebank in improving management skills.

At the Sisters of Charity clinic, tired, gaunt men propped up by their wives and families arrive each day suffering from tuberculosis, pneumonia and other diseases that ravage their immune systems. Those who can walk are often given medicine and sent on their way. The worst find a place in the beds recently cleared of the dead.

"If there are 10 men who come, seven or eight of them will test positive for the HIV virus," said Brother Thomas Pulickal, the missionary who runs the clinic, which sits on the edge of vast slum called Cite Soleil. "A year ago, it was more like six out of 10. The number of people with the virus is growing, and we're trying to help them, but it's very, very difficult. You give them medicine but many of them don't take it for long, or don't return to get more."

The men who lie on the open-air clinic's 47 cots represent the backbone of the working poor in this country. Many are bus drivers, day laborers and fishermen. Some are ex-soldiers, whose positions of power gave them sexual access to needy women. Most are in their late 20s and 30s, though many look far older.

"I had a wife, but when I became sick and couldn't earn any more, she left me," said Gerald Ulyses, 35. "I was here for a month, then left to go back to work. Then my stomach just swelled up, and back here I've come. I don't really have anybody to help me here -- my father and mother died. My wife is now sick, too." Holding up a small paper cup with cookies, he offers them to a visitor. "I can't really eat anything anymore, you might as well have them," he said. "I just want to be well and work again. Any work. But I can't even really stand."

Today is World AIDS Day, designated by the United Nations to recognize the estimated 42 million people infected with the disease, which has killed at least 20 million people as it enters its third decade. As part of that observation, the South Florida Sun-Sentinel recently returned to Haiti to revisit some of the places and people profiled in a special section on AIDS in the Caribbean published last year.

Very little has changed in the past year. While more people are receiving the drug cocktails that prolong life, their numbers are minuscule compared with growing numbers of infected. Programs to help others are expanding, but the pace is very slow and the money needed to expand them still is not in place.

The situation in Haiti reflects conditions in many of the hardest hit countries around the world, where most of the infected don't even know they carry the deadly virus. A report released last week by the United Nations says the plague is growing exponentially, and likely will infect an additional 45 million people in the next eight years if prevention and treatment programs costing at least $10 billion are not implemented.

The poorest country in the Western Hemisphere, Haiti's population of 8 million has the highest HIV infection rate in the world outside of sub-Saharan Africa. It was here, in the early 1980s, that AIDS appeared in such numbers that health officials stigmatized Haitians by singling them out as a risk group with hemophiliacs, homosexuals and intravenous heroin users -- the notorious 4H's.

The nation's dire poverty, the lack of basic health care, sewage systems, drinkable water and good roads has hindered efforts to stem the spread of the disease. Political disarray, which sent hundreds of thousands of infected refugees fleeing urban slums into the countryside, widened the deadly swath of AIDS during the 1990s.

Compounding the disaster is the plague's cascading effect through families, villages and the island's economy. Often carried by the highest earning males -- truck drivers, soldiers and traveling salesmen -- AIDS in Haiti has left women and orphaned children fending for themselves. The disease has now reduced adult life spans by at least five years, from 51 to 46, according to health experts, essentially erasing a century of medical progress.

Few of these survivors even know they have been infected with the HIV virus that causes AIDS. And many don't want to find out because of the stigma attached to the disease, say local doctors. If the disease continues to spread in Haiti, many think it eventually will erase entire villages as it has in southern Africa, where the family breakdown is fueling a regional famine. According to the Central Intelligence Agency, Haiti's population is contracting because of AIDS-related fatalities.

"I've been sick ever since my husband died, but you know, I really can't afford to go to a doctor," said Lucette Riviere, 33, whose husband, Odres Victor, died of AIDS-related tuberculosis last year shortly after being profiled in the Sun-Sentinel. "I've got six kids to take care of, and I used up all our money to send one to the hospital."

After her husband's death, his family turned their backs on her. A sister-in-law who owns the unfinished cinder-block house where Riviere lives has boarded up one side of it, pushing the mother and her children into a single room.

"There just isn't enough money for me to worry about myself," she explained. "I got a loan to start a small business on my own, but that money's gone now on medicine. At some point, you just give up and hope God will provide. What I want most is to get the two oldest through school so maybe they can get jobs and help out."

Claudy Petit-Homme, 20, has seen the disease wipe out his entire family. He has been sick for nine months and cannot walk from his bed at the Sisters of Charity clinic. He has lost so much weight that his legs have shriveled to the bone.

"They have given me the medicine now and I'm starting to feel better," referring to anti-retroviral drugs. "I just wish my family had got some. First my father got sick and died. No one knew why. Then my mother, and then my stepfather. My sister is sick, but she doesn't come here. I'm not sure where she has gone.

As the family fell, neighbors began to turn on them. One night, someone burned down their house.

"I really think that house was haunted anyway, seeing what happened there," he added.

An estimated 300,000 Haitians have died of the disease since 1980 -- by far the largest toll in either the Caribbean or Latin America. More than three-quarters of the Caribbean region's 440,000 cases are in Haiti.

"Haiti has by far the highest prevalence rate in the Caribbean -- about 6 percent of the adult population," said Peter Piot, the head of UNAIDS, the U.N. agency that leads global efforts to fight the epidemic. "It's got very poor infrastructure, certainly not the strongest government. These are all factors that hinder the response to HIV/AIDS."

Haiti is scheduled to receive one of the first multimillion-dollar grants from the Global Fund to Fight AIDS, Tuberculosis and Malaria -- the independent agency created by the United Nations and funded by the United States and other nations to fight the disease in the most troubled countries.

The price of drugs also has come down, lending hope for care to many. In the United States, these AIDS drug "cocktails" can cost up to $15,000 a year. But under international pressure, drug companies have lowered their costs to as low as $350 a year for generic versions. Despite this huge price drop, only 230,000 citizens in low- to moderate-income nations are taking the drugs, and most of them are in Brazil, according to the United Nations.

Many small treatment programs in Haiti are showing signs of success, Piot said. One such program, administered by Harvard physician Paul Farmer in the country's remote Central Plateau, is successfully treating about 200 people with life-prolonging anti-retroviral drugs backed by extensive counseling.

Successful treatment involves far more than dispensing medicine in Haiti. Few people here own automobiles, making travel back and forth to a clinic extremely difficult. The medicine itself can cause nausea, headaches and occasional vomiting, which prompt many to quit taking it. Finally, it must be taken with regular meals, a luxury for many here who survive on extremely small portions of food.

At the Sisters of Charity clinic, doctors began handing out medicine earlier this year on a case-by-case basis. But many of those who received the pills didn't return to continue the treatment. Others refused to take them but continued coming even as they got sicker. The clinic doesn't have enough employees to launch follow-up visits into homes.

"It's gotten to the point where we have to decide who we give the medicine too --who's the most likely candidate to use it," explained Rick Frechette, a Catholic priest who has spent more than a dozen years offering medical care in the slums of Port-au-Prince.

"Out of 40 people we've given medicine, only 18 are on it now. The rest either didn't return or after a dose or two, stopped taking it. That's not good, but it's the best can do now under these conditions," he added. "You have to accept the limitations here."