Expanding Global HIV Treatment
Case Studies from the Field
Address for correspondence: Salmaan Keshavjee, Division of Social Medicine and Health Inequalities, Brigham and Women's Hospital, FXB Bldg.—7th floor, 651 Huntington Ave., Boston, MA 02115. Voice: 617-432-3215; fax: 617-432-6958.
In the last 25 years, human immunodeficiency virus (HIV) has become the leading infectious killer of adults globally, with an estimated 44 million people infected with the virus worldwide. Most of these individuals live in poor regions of the world, particularly sub-Saharan Africa. Although a great deal of work has been done in identifying and treating individuals with the disease, there has been little action to date to address the complex socioeconomic factors that lie at the heart of this global pandemic. Understanding and responding to such factors is of paramount importance if HIV infection is to be managed in a meaningful way. This article explores the social context of people living with HIV in three different geographic and epidemiologic settings and highlights the social factors that shape and define an individual's risk of acquiring HIV. It also discusses unique programs aimed at addressing the complex realities of the world in which HIV thrives. These programs can act as models of HIV prevention and treatment.
In less than a quarter century, human immunodeficiency virus (HIV) has become the leading infectious killer of adults worldwide, with an estimated 44 million persons infected.1 Billions of dollars have been spent in efforts to address the AIDS pandemic, including the development of prevention strategies, the creation of new drugs, and the support of community-based efforts to mitigate the effects of the disease. Yet, prevention efforts—which largely target the individual—cannot keep pace with the thousands of people who are becoming infected each day; treatment efforts have accelerated but have yet to reach the poorest areas of the world, where logistical and programmatic constraints have led to many preventable deaths.
Although the biological understanding of HIV and the development of new drugs has advanced rapidly, we are losing the global battle with HIV. There are many reasons for this: Foremost among them is that HIV is inextricably linked with poverty. Although it is true that “anyone can get AIDS,” a careful assessment of this disease shows that those most likely to become infected with and die from HIV are those who suffer from poverty and inequality.
Although most practitioners acknowledge that social factors affect many aspects of HIV infection, the tendency has been to focus on “behaviors” or “lifestyles” that place some at risk for infection.2–4 Yet, it is well documented that “risk”—here, susceptibility to infection and poor outcomes—is the product of multiple structural forces, including poverty, racism, and gender discrimination.5–13 Although these structural forces may not themselves be amenable to urgent intervention, there are strategies that can improve patient access to care.14,15
Through case studies from three sites—Peru, Boston, and Lesotho—we will attempt to resocialize HIV beyond the focus on behaviors and adherence that have characterized some previous discussions. Our aim is to demonstrate that addressing global HIV as a complex biosocial phenomenon requires the delivery of appropriate care in programs that ensure patient access by ameliorating the effects of structural forces.
Aids, Abuse, and Alcohol in Peru: Miguel's Case
Peru is one of the poorest countries in Latin America, with a per capita gross domestic product of US$6,600,16 and suffers from some of the highest rates of infectious diseases in the region.17,18 Compared with other countries, Peru has a relatively low HIV prevalence, with an estimated 93,000 individuals (0.6%) living with HIV,19 of whom 65% reside in Lima.20 Published reports on HIV transmission in Peru cite primary risk factors of men having sex with men, early sexual activity, and number of past partners among women.19,21–23 However, among recently diagnosed patients in Lima, heterosexual sex among impoverished individuals is a prevalent mode of transmission.24 The case of Miguel, a young man from the capital city, Lima, is emblematic of this.
Even when Miguel was diagnosed with HIV, he did not consider it the worst of his problems. Miguel had spent his entire life struggling to survive from one day to the next. His parents lived in an invasión, a group of homeless squatters who invaded a privately owned land and, by Peruvian law, gained ownership by managing to stay there for a requisite number of years. He grew up in a one-room shack made from bits of trash collected from the streets, meagerly supported by the periods when his father was sober enough to work. Because of his father's abusive behavior, his mother eventually fled the house, and the children were left in the care of his father. Miguel dropped out of primary school, his main concern being his next meal. Work was scarce: The most reliable way to eat was to steal. As he grew up, he began to join the family drinking. Occasionally, he found himself propositioned by both men and women; if he was drunk enough, he would agree as another way to make ends meet. When his father died, he inherited the shack and ultimately started his own family.
To provide for his family, Miguel worked seasonal and temporary jobs as a painter and in kitchens. As with many Peruvians, the sporadic nature of his work made making ends meet nearly impossible. Things became worse when Miguel began to get ill. His symptoms were insidious: fatigue, weight loss, and poor appetite. Miguel knew he was unwell, but he couldn't afford the time and money required to go to a doctor. He started to have painful sores in his mouth. The sicker Miguel became, the more focused he became on trying to work. If he were to die, his family would be left with nothing. His only wish was to work as much as possible, while he was still able. A year later, he had lost 8 kg.
Miguel knew that he was dying. Only on the insistence of his wife did he agree to see the doctor. When he went to the local health center, his physician advised him to be tested for HIV. In October 2005, Miguel's test for HIV returned positive; his doctor informed him that, fortunately, HIV treatment was available for free in Peru and that he should start treatment as soon as possible. There was one catch: Before he could start treatment he would need to be seen at the referral hospital and obtain a series of tests, for which he would have to pay. With no health insurance, steady job, or assets, this was not an option.
Three months after his diagnosis, Miguel developed a lump on his neck, and his fever, previously intermittent, became constant. His family decided that they could not afford to wait any longer. Miguel's brother-in law, Christian, had to carry Miguel on his back down the rocky slanted hill that led to the road to take a taxi to the hospital. At the hospital, Christian helped to pay for the services and tests that ultimately revealed the presence of tuberculosis (TB) adenitis. However, the family did not have money to go back to the hospital to learn the results.
Later that month, the community health promoter who had previously met Miguel—an employee of a nongovernmental organization, Socios En Salud (SES)—came to see him. Miguel's situation was so grave that the promoter brought him to the local health center, where Miguel began TB treatment. Soon thereafter, unable to keep down any food, he was hospitalized (with financial assistance from SES). His condition improved with medical attention, TB treatment, and nutritional supplements. Once Miguel was discharged, the SES promoters provided food and transportation support to Miguel and his family. On April 21, 2006, more than 6 months after diagnosis, Miguel finally started antiretroviral therapy (ART).
Fragmented families, unemployment, and heavy alcohol use characterize many households in the squatter settlements. These communities in the urban periphery of Lima arose as a result of waves of migration from rural provinces forced by political violence during the Shining Path, and in later years, economic hardship in the wake of “Fujishock.”25,26 Thus, although the proximal risk factor for Miguel's acquisition of HIV was bisexual sex in exchange for money, the motivations behind his actions were fundamentally rooted in a common distal risk factor for acquiring HIV: poverty resulting in substance abuse, depression, and food insecurity. For Miguel, sexual exchanges were not a choice but rather a necessary sacrifice for survival. These structural factors not only placed Miguel at risk for contracting HIV but also contributed to life-threatening barriers to starting ART.
As tragically illustrated in Miguel's case, given the many complexities associated with the AIDS pandemic, it is unlikely that simple solutions—such as simply offering free HIV testing and free ART—will be adequate. For this reason SES, a pioneer in the treatment of drug-resistant TB in the urban slums of Lima, began working on the HIV problem. As with its previous TB work, SES realized that financial and logistical barriers prevented patients from accessing the health system. In response, SES provided financial assistance to impoverished HIV patients, as well as community-based support to help patients navigate the health system and understand their diagnosis.27
However, the task for SES was not complete once patients successfully began treatment. Once on ART, impoverished patients were again at risk of poor outcomes: The greatest risk factors for nonadherence to ART among HIV-positive patients in Peru are low social support, depression, and substance abuse—all products of poverty.28 SES started a project for paid community health workers to accompany patients. These are workers who deliver directly observed ART, nutritional and transportation assistance, and psychosocial support. SES's team works with health professionals to maximize HIV treatment adherence and address psychosocial stressors during the 18 months of ART. To date, the SES program has helped more than 2,500 patients initiate Ministry-sponsored HIV therapy and accompanies more than 100 patients on ART.29
HIV and Inequality in the United States: The Case of Bernadette
For HIV providers in the United States, the association of AIDS and poverty is an all too familiar one. Although the largest number of individuals living with HIV in the United States still comprises white men who have sex with men, they are not the population progressing to AIDS or HIV death.30 In fact, black men and women (who constitute only 13% of the U.S. population) account for more than 50% of AIDS cases and more than 50% of AIDS deaths in the United States.31 An increasing number of individuals living with and dying from AIDS are female, reside in the South, and acquired their HIV through heterosexual transmission.32 In Boston, a black woman infected with HIV who lives in Roxbury (a poor and predominantly black neighborhood) is 15 times more likely to die from AIDS than is a white man from Boston.33 Why do black women in the United States bear a disproportionate burden of HIV-related disease and death? The reasons are not biological; the virus itself is not prone to behave more aggressively in black women. As the story of Bernadette illustrates, the reasons are related to social factors—marginalization at multiple levels—that negatively affect access to and use of available resources and medical technology.
Bernadette is a 37-year-old African American woman living in Boston's inner city. She was diagnosed HIV-positive more than 10 years ago and believes that she contracted the virus from her ex-husband, who has since died. She relies primarily on a meager disability check from Social Security to support herself and her two children. Although intermittently homeless in the past, she now lives in subsidized housing in Mattapan, a community whose residents are primarily poor and black. Bernadette's family moved to Boston from Virginia four generations ago. She has a sixth grade education and has never been gainfully employed. She has been in a string of bad relationships and has often been the victim of domestic violence; her current partner (who supplements the family income) is physically abusive. She has a long history of depression and alcohol and cocaine use. She recently learned that her 15-year-old daughter is pregnant.
Bernadette's HIV disease is not well controlled despite medical insurance with full prescription coverage, two case managers, a primary care doctor, an HIV specialist, and having been prescribed ART over the past 8 years. She continues to struggle to make her medical appointments and take her medications. Consequently, her immune system is weak (CD4 count is 4 cells/μL,) she weighs 84 pounds, she is frequently hospitalized for opportunistic illnesses, and her viral load is exceeds 750,000 copies/mL, suggesting that she is not responding to her salvage ART regimen. Her doctors state that she is “dying” from depression and denial.
Although depression is probably an important factor in Bernadette's course, her lot is similar to that of many African Americans interacting with the health system. For some the problem is underinsurance,34–37 but even for those with insurance, access to a host of required medical interventions—from renal transplants to treatment for congestive heart failure and pneumonia—is linked to their race.38–42 The geographical areas in which people live and the nature of their clinics—for example, location and flexibility vis-à-vis appointments—all affect patient care and disease outcome.43–48 Pharmaceutical costs are lowest and hospital costs are highest among underserved groups, including blacks, women, those who have not completed high school, and patients without private insurance.49 Patients with the lowest CD4 counts (< 50 cells/μL) accrue medical costs of $2,344/month, as opposed to those with the highest CD4 counts (> 500 cells/μL), who accrue costs of only $532/month.50 For patients with low CD4 counts, the bulk of expenditure is for non-ART medications and hospitalization.51
One solution to the problems faced by disadvantaged and underserved groups in the United States is the Prevention and Access to Care and Treatment (PACT) Project, an existing community-based HIV health promotion program affiliated with Partners In Health (PIH) and the Division of Social Medicine and Health Inequalities at the Brigham and Women's Hospital. For more than 5 years, PACT has used the concept of peer health promotion to address the needs of impoverished, minority individuals with advanced AIDS in Boston who have had difficulties with adherence. These patients are referred to the program as having “failed” standard care. Most have lived with HIV for more than 12 years, have viruses with significant ART resistance, and have a long history of poor adherence.
Similar to the Peru intervention, PACT pairs each patient with HIV health promoters, lay community residents who develop their knowledge and skill through module-based and field-based training. Patients receive monthly, weekly, or daily home-based support services (a three-tiered model) to help them adhere to their medication regimens and medical appointments, practice harm reduction, and increase self-efficacy. Over 6 months, health promoters administer an educational and counseling curriculum that addresses such topics as psychological adjustment to life with HIV, medication side-effect management, effective communication with providers, and pharmacy management. Health promoters also provide patients and their families with social support and collaborate with other agencies to make sure that patients have adequate food, housing, mental health care, and substance abuse counseling. They particularly focus on helping patients adhere to their medication and treatment recommendations with the aim of reducing rates of opportunistic illness, costly hospitalizations, and death. Some patients “graduate” from the program but can return at any time.
The findings from PACT have been heartening. To date, 220 patients have been enrolled; after 12 months of participation, patients had a clinically significant increase in median CD4 count from 145 cells/μL to 220 cells/μL. Patients experienced an average decrease in median viral load from 30,641 copies/mL to 421 copies/mL; 48% of patients achieved a sustained undetectable viral load at 1 year. An analysis of the hospital billing records of 40 PACT patients in 2006 showed a 35% decrease of inpatient hospital day use and a 50% decrease in hospitalization costs, from an average of $22,443/patient to $12,926/patient—important savings compared with the $3,600/patient/year that PACT support costs.
Bernadette was referred to PACT in 2005. She did not join the program until spring 2006, when she was hospitalized for pneumonia. Upon discharge, she called her PACT health promoter and said that she was ready for services. Three months later, even though her adherence was still not at goal, she started directly observed ART. Within 9 months of engaging with PACT, she had gained almost 60 pounds. Her CD4 count was 289 cells/μL and her viral load was undetectable on two successive readings. She was more than 90% adherent to her medical and social service appointments and received support regarding her daughter's pregnancy, her abusive relationship, and her drug abuse. She continues to thrive in the PACT program.
Poverty, Mine Work, and the HIV Pandemic in Lesotho: The Case of Matsepo and Kolobe
Lesotho is a mountainous nation, home to almost 2 million people, and it is surrounded by the Republic of South Africa. It has the third-highest HIV seroprevalence rate in the world, with an estimated 25%–30% of the population living with HIV.52 The isolated mountain regions are as affected as urban centers, with seroprevalence in some villages reported at 70%. One-quarter of Lesotho's children have lost one or both parents to HIV, and Lesotho has the highest population density of orphans in the world. The economic consequences of losing the most active segment of the population have put Lesotho in further peril; the country is facing its worst food crisis in 30 years. Although the ravages of HIV have manifested themselves in the postapartheid period, as the story of Matsepo and Kolobe suggests, the roots lie at the nexus of a long history of social, economic, and political deprivation.
Matsepo was only 27 years old when she died of AIDS-related complications in a small village on a mountain in the remote village of Ha Ramojane in Lesotho. Her story, sadly, is not unique. Matsepo was born in rural Lesotho, the fifth of seven children. Although school was free, she left after the primary level because her parents could not afford the uniforms and books. Despite being able to read and write, Matsepo could not find employment. Her older brother and sister were working in South Africa and sending money home for the family, but this was not enough to keep the family warm and fed through Lesotho's harsh winters. Matsepo's mother became ill with a chronic cough, eventually requiring hospitalization. To pay for this, Matsepo found temporary employment dying denim fabric in a garment factory. She worked 16 hours a day, 6 days a week and earned less than US$10 a month. Her hands became stained permanently blue from the chemical dye.
Unfortunately, her employment did not last long because the factory closed and Matsepo returned to her village. By that time her mother had died and the household work fell to Matsepo and her older sister, who herself was ill and often covered in rashes and sores. Although Matsepo and her father sought help for this sister, the effort was to no avail. Her sister was not strong enough to make the long and arduous 5-hour journey over mountains and valleys to the nearest clinic, and the family could scarcely afford the user fee. Several months later, Matsepo's sister died, leaving two small children, one of whom was also ill.
One day a young man from the village came to speak with Matsepo's father. His name was Kolobe and he was looking for a wife to help care for his young son, whose mother had died the year before. He proposed marriage to Matsepo as a way to help her family and his. Matsepo's father readily accepted: Kolobe would be going to work illegally in a diamond mine in South Africa as a blaster, and although there would be risks to him, the pay was high and in cash. A week later, Kolobe and Matsepo were married, and he returned to South Africa.
In the mine Kolobe worked 12 hours a day, 7 days a week, often crouched in a tunnel 4 feet high. He rarely saw daylight and shared sleeping quarters with 50 other men, usually from other poor countries. Although he dutifully sent money home to Matsepo and his son, he occasionally would blot out the pain of his daily existence with alcohol and was known to indulge himself with one of the commercial sex workers at the mining camp.
At Christmas, Kolobe returned to Lesotho. He and Matsepo were overjoyed to see one another. Kolobe's son had grown, and although one of Matsepo's sister's children had died, the other was doing well. With the monies that Kolobe was sending home, the family's economic situation was stable. They spent 3 weeks together, after which he had to return to the mine. When Kolobe returned in April, Matsepo shared the news that she was expecting their first child. Although Kolobe was excited for this, he was worried about a constant cough that he had developed. He even coughed blood sometimes and was plagued by a persistent fever.
Despite his weakening physical condition, Kolobe returned to the mines. In Kolobe's absence, Matsepo gave birth to a baby boy who died after 2 weeks. Kolobe was unable to return home and heard about this family tragedy only from another villager who had come to South Africa. Kolobe returned home again at Christmas and Matsepo was shocked at how thin and frail looking he had become. She urged him to see a doctor, and although they walked 6 hours through the rains to reach the health center, they found it locked and unattended. They had to spend the night in a hut on the roadside without heat and food. Although Kolobe returned to the mine, he was unable to work properly and was sent home. He found that Matsepo was pregnant again, but he was too weak to rejoice and constantly worried about the family's survival. Kolobe lost so much weight that Matsepo barely recognized him. He coughed large quantities of blood daily and could not walk for longer than 10–15 minutes at a time. Matsepo cared for him as best she could, but within 2 months Kolobe died. Six weeks later, Matsepo give birth to a baby girl.
Sadly, Matsepo herself had begun to feel ill, wracked with nightly fevers. Concerned about the welfare of her children and her father, she unsuccessfully sought work. When a mine worker who had returned to the village offered to give her food for her family if she would agree to sexual intercourse, she agreed. As the months wore on, Matsepo's health status became worse and she also began to cough blood. Fearing for her children's welfare should she die, Matsepo decided to undertake the long journey to the health center, where she had heard that there were new doctors and nurses working.
When the doctors from Partners In Health Lesotho (PIH Lesotho) saw this 35-kg woman covered in open sores and coughing, they immediately obtained a sputum specimen, and Matsepo underwent HIV counseling and testing. Her test was positive for HIV and she began TB therapy. Her sister's child and her own child also underwent HIV testing; both came back HIV-positive and began ART. The physician sent Matsepo home with nutritional support and planned to make a home visit to her village in 2 weeks to start Matsepo on ART. Unfortunately, Matsepo began coughing large amounts of blood one night and perished. Upon arrival in the village, the doctor found the two children living with their elderly grandfather, cold and without shoes. The family was given support. Outreach and education was done in the village regarding HIV and TB, and through intensive efforts, most of the villagers agreed to undergo HIV counseling and testing. Of the 72 inhabitants in the village, 47 tested positive for HIV.
Stories such as Matsepo's and Kolobe's are commonplace in Lesotho. Since the first diamonds were discovered in South Africa in 1867, a significant portion of southern Africa's income has come from the mining of diamonds and precious elements. By some estimates, remittances from mine workers account for nearly 60% of Lesotho's gross domestic product. Entire communities depend on migrant mine work to survive. At the mines, workers live in overcrowded barracks, away from their families and communities for long periods, with easy access to alcohol and commercial sex workers.53–56 As part of the legislation that became known as apartheid in the 1940s, black men were forbidden to bring their families and settle in the communities where they worked. Moreover, men from neighboring countries like Lesotho are forced to work illegally, without benefit of even the small safety net afforded to poor South Africans. This situation is particularly dangerous given the risk of becoming ill: In addition to exposure to occupational illnesses and TB,57,58 the mines have become a locus of transmission for HIV.59 As men return home from the mines for short holidays, they bring HIV and other diseases with them, entrenching the disease in their communities. One survey performed in a clinic in rural Lesotho showed that 90% of HIV-positive men had a history of working in a South African mine.60
Although some care is available at the mines, workers fear seeking medical attention for fear of deportation and loss of income.61 When they return home, they are usually faced with a dearth of health care resources and user fees that they can ill afford. Recently, the Ministry of Health and Social Welfare joined forces with several foreign nongovernmental organizations to provide HIV testing and preventive services and care to the entire population, even those living in remote mountain areas. PIH Lesotho is leading these efforts and has launched a rural initiative in the mountains to provide HIV treatment and preventive services, in addition to primary care; maternal and child health care; and the management and treatment of TB, sexually transmitted infections, and malnutrition. The backbone of this effort is a staff of trained and paid village health workers who visit patients daily in their homes and number more than 400 in three mountain regions alone. To date, more than 2,000 HIV-infected individuals have been identified and more than 600 are receiving ART. The program provides a model of high-quality and sustainable care that can be undertaken even in the most remote settings.
AIDS and Poverty: Conclusions
Analyses in the scientific literature of the varied spread of HIV globally often rely on biological explanations; the extent of many social analyses is often limited to “patient barriers,” such as low health literacy, mental illness, and cultural difference.62 An example of this concept is the recent debates over the lack of male circumcision as a driving force in the HIV pandemic in Africa.63 Although there are good data indicating that male circumcision may decrease the likelihood of HIV transmission, there have been no studies, operational or otherwise, that have demonstrated that increasing male circumcision will lead to decreased HIV rates in settings that are rocked by poverty, hunger, racism, and inequality. In many ways, this approach is reminiscent of scholarly writing in the early 1990s that blamed preference for “dry and tight vaginas” as the force driving the HIV pandemic in Africa.64,65 Although certain social practices can affect transmission, given the profound effect of poverty and inequality on an individual's susceptibility to HIV infection, accepting that they are the principal forces behind the high prevalence of HIV noted in sub-Saharan Africa is difficult. Rather, a variety of social determinants—serious societal and health care system problems often rooted in poverty and poor programs—play a significant role in making some communities more susceptible to infection with HIV and less likely to receive appropriate care.
What are the lessons from the case examples of Peru, Boston, and Lesotho? The first is that properly understanding and addressing the HIV pandemic requires a biosocial approach where biology, phenomenology, and the social and historical roots of the disease are taken into account. It would be dishonest to view Bernadette's case without, at some level, considering the history of slavery, genocide, and patriarchy that placed her in a specific societal locus; to not acknowledge that Miguel's poverty and abusive childhood of deprivation, the product of a state system that disregarded the urban poor, did not contribute to his condition; to ignore the role of centuries of colonialism, apartheid, and economic deprivation in determining the devastating circumstances faced by Matsepo, Kolobe, and the people of Lesotho. Rather, these factors are the roots of the epidemic, which policy makers and program planners must address.
Second, biosocial analyses must go beyond the academic, to become part of a programmatic approach to overcoming barriers to care. For example, in each case study, the programs reconfigured “patient factors” into “programmatic factors” that called for programmatic solutions. By moving away from a limited view of HIV as a biological entity shaped by patients' personal and psychological problems, the programs could address specific barriers—such as lack of food, housing, transportation, childcare, and economic opportunity—and deliver appropriate biomedical care to patients. As we and others have demonstrated elsewhere, the importance of removing clinical, economic, and community barriers to care is paramount to the success of HIV treatment and prevention programs.14,66,67
Third, providing care to patients in villages and communities where they live can help improve access to care. Especially for chronic diseases, such as HIV, this strategy decreases the effects of structural barriers to care (and often has the collateral benefit of creating jobs in communities that need them).13,68,69 It does not mean that clinics and hospitals are not required; rather, community-based delivery of care for chronic illnesses should be viewed as logical and necessary extensions of the activities of larger, specialized health facilities. Such interventions are not only cost-effective but, as we have described, can also positively affect patient adherence to treatment.
The linkage is well known between social, economic, and political conditions and epidemics, disease, and poor health outcomes.70,71 Yet, there has been a gap between this knowledge and large-scale implementation of programs that can support and sustain patients undergoing treatment for HIV and other chronic conditions. The cases reveal the need for interventions that address the social roots of this pandemic by eliminating barriers to effective care. The next challenge will be to replicate such programs on a larger scale.
Source of funding and conflict of interest: Furin, Shin, Mukherjee, and Keshavjee received partial salary support and/or travel support from the Bill and Melinda Gates Foundation, the Eli Lilly Foundation, and the Frank Hatch Fellowships in Global Health Equity at the Brigham and Women's Hospital. Shin, Mukherjee, and Behforouz received additional salary support from the United States National Institutes of Health. Keshavjee received additional research and travel support from the John D. and Catherine T. MacArthur Foundation. Shin received additional salary support from the Infectious Disease Society of America, the Eleanor Miles Shore Fellowship, the Rockefeller Foundation, and the Heiser Foundation.