•In observation of World AIDS Day, this research brief seeks to bring light to the oft-ignored plight of indigenous peoples and HIV/AIDS
•Little data exists on HIV/AIDS in indigenous communities, and what is available illustrates a veritable crisis
•NGO’s and national governments must act now to address this issue
Numerous indigenous men, women, and children have died from “an epidemic that may be malaria,” according to the Canadian Press in October 2010. Part of the Yanomami ethnolinguistic group, the affected towns are so remote from urban centers that health workers must travel for days to bring them aid. Officials suspect that invasive mining operations first introduced the disease. While the international movement for indigenous rights has spotlighted the Yanomami for their attempts to maintain their independent culture and identity, the desire for cultural preservation does not excuse the inability of a country like Venezuela, which prides itself on its social programs, to prevent and treat such public health disasters.
Let us change this narrative slightly: the indigenous group is now a Peruvian highland community, whose men frequently take produce and wares to be sold in cities. During their time in these urban environments, some of these indigenous men engage in risky behaviors and return to their villages unaware that they have been infected with HIV. The infection spreads rapidly, and by the time villagers start dying, a large proportion of the population is already HIV positive. From here, the plot follows that of the ‘malaria’ epidemic; since villagers have limited access to adequate healthcare in the form of screening and testing, by the time the outbreak is addressed, it has already become an epidemic.
Consider another version: a Guatemalan village in the department of Huehuetenango sends several of its young men to the United States to work from six months to a year as seasonal workers. Again, while in the U.S., they engage in risky behaviors and return to their homes with HIV. The disease spreads, as it is initially misdiagnosed as pneumonia or diabetes. Eventually, the villagers realize the truth about the illness but, due to religious biases, they refuse to address it in a sustainable, effective way. As a result, Huehuetenango continues to see a large increase in HIV infection.
The International Indigenous Working Group on HIV/AIDS (IIWGHA) is a worldwide network of representatives of native groups that seeks to incorporate “first peoples” into the international efforts to address and combat the spread of HIV. Over half of the members of the IIWGHA represent Central or South American indigenous peoples. As they prepare to release their strategic plan of action in the next few months, it is clearly time to address the social marginalization that has heightened the risk of infection in indigenous populations.
Indigenous Community Marginalization and Health
In 2006, the United Nations Economic and Social Council issued a paper to the Permanent Forum on Indigenous Issues that explained the processes of marginalization that make indigenous communities (ICs) more susceptible to diseases like HIV.1 It began with an important statement that defines the most serious aspect of this problem: “Very few countries have any reliable national surveillance data to indicate the true level of HIV infection among indigenous peoples.” This challenge is as illustrative as it is problematic; the dearth of reliable data both demonstrates the lack of attention paid to this crucial issue and makes it difficult to convey just how important addressing HIV in ICs is.
Furthermore, the paper outlined the risk factors that increase vulnerability to HIV: “poverty, marginalization, lack of political or social power, fragmentation of family and community relationships, geographical isolation, low literacy rates, poor general health, limited access to health care, drug use/infection and low individual or community self esteem.” Though the specific intensity of these risk factors varies among different ICs, all ICs face them to some degree, and they are usually interconnected and quite overwhelming.
The legacy of colonization has left ICs in Latin America significantly marginalized. Most of these groups were forced off of their ancestral lands, which has contributed to critical health issues caused by persistent poverty. With the expenses brought on by poor general health in the community, the “increased burden of care” means that individuals are rarely capable of financially coping with debilitating diseases like HIV/AIDS, much less of engaging in preventative strategies like condom use. The strong correlation between poverty and HIV infection has been analyzed in innumerable contexts, demonstrating that poverty results in less education, poor/inadequate healthcare, and a higher susceptibility to sexual exploitation. Geographical isolation compounds these challenges.
Though colonization and imperialism are partly to blame, other factors have combined to relegate ICs to relative social and political obscurity. Because the circumstances of the HIV crisis faced by ICs are unique, any IC-focused policies will have to consider this political marginalization. As the UN report puts it,
“Because the spread of HIV in any community involves complex questions of culture, sexuality and social relations, and because indigenous cultures, by definition, are different from prevailing or mainstream cultures, the development of strategies to reduce the impact of HIV on indigenous populations requires real and active engagement with those communities.”
In most Latin American governments, this concept is not well understood or effectively implemented.
Louisa Reynolds reported her findings on HIV in Guatemalan ICs in the Latinamerica Press in July of 2009.2 This article, which provided one of the earlier-cited anecdotes, began in the city of Almolonga, in the Guatemalan department of Quetzaltenango. Almolonga registered 14 new cases of HIV in the first seven months of 2009. Reynolds reported that, although the mayor recognized the crisis and attempted a campaign for condom use, the town’s evangelical churches vetoed his efforts. Quetzaltenango had 206.71 cases per 100,000 inhabitants, with a total of 1551 HIV positive citizens at the time of the article’s publication, a number which can only continue to grow without active efforts to impede it. The age group most affected was teens and young adults ages 15 to 25.
In her analysis of HIV/AIDS and migration, Reynolds cited both Guatemalan-Mexican and Guatemalan-U.S relationships. The municipality of Coatepeque, “part of the route used by undocumented emigrants” to Mexico, had seen 602 cases of HIV since the breakout of the disease in 1989. The department of Huehuetenango, “where emigration to the United States has increased rapidly in recent years,” had an HIV rate of 18.13 per 100,000. Unfortunately, over the two decades since the initial case and Reynolds’s study, most of those cases had progressed into full-blown AIDS due to misdiagnosis and lack of proper treatment.
Finally, Reynolds quoted another Guatemalan mayor, Saturnino Figueroa of San Jaun Ixcoy in Huehuetenango:
After people migrate, they come back with sexually transmitted diseases such as AIDS, which has already caused a number of deaths. A young man comes back from the United States infected with the disease and has sex with a number of women. All the women in the community want this man to marry them because they think he will give them material goods. Then, these women have sex with other men and that’s when it becomes a threat to the population. It’s an issue that few people are willing to talk about because it involves a person’s honor and people prefer to remain silent.
Unfortunately, this dynamic of increased HIV susceptibility from patterns of migration pervades the ICs of the Latin American communities.
Dr. Judith García analyzed the Guatemalan HIV/AIDS situation in 2007.3 During the period between July 2003 and March 2007, 3312 cases of HIV infection were reported, of which only 18 percent were indigenous (mayas). However, due to the aforementioned factors, in an indigenous population, even a low rate of HIV poses a serious threat to the health of the entire community. More importantly, García’s study was a descriptive analysis of cases in the national database, where rural, indigenous cases would be less likely to appear. Relevantly, she referenced another survey, which asked participants: “Can a person have AIDS without symptoms?” and “Is there a cure for AIDS?,” questions which 18 to 25 percent of those surveyed could not answer correctly. García also explained that the “lack of knowledge is elevated in rural areas, in indigenous men and those lacking education.” Additionally, while Guatemala’s HIV/AIDS epidemic is considered “concentrated” in the high-risk groups of sex workers and men who have sex with men (MSM), 26.8 percent of the latter responded that they had at some point been married or in a sexual relationship with a woman.
Carol Zaveleta’s research team studied an Amazonian Aborigine community in Chayahuita in the Peruvian department of Loreto (which has the second highest rate of HIV infection after Lima).4 This report quoted other studies that “show a more permissive sexual culture” such as “a high frequency of MSM behavior.” The group interviewed the 162-member farming community with 72.2 percent participating fully, and found that six of the 80 adults were HIV positive. Though somewhat distorted by the small population, this infection rate was ten times higher for men and three times higher for women than the general Peruvian rates.
In addition to this unnerving HIV infection rate, the study unearthed another dire threat to ICs — “none of the participants reported ever using a condom.” With varying sexual practices and norms, some cultural groups do not make condom use (the most simple form of HIV/AIDS prevention) a common practice. When these factors combine with limited condom access, ICs lose one of the most effective methods of preventing HIV transmission. In the case of Chayahuita, the Ministry of Health provides free condoms, but the main hospital is 12 hours away via river or 24 hours over land.
The UN reported that, though in 2000 only 4.6 percent of HIV/AIDS cases in Mexico came from rural locations, in the decade since, the disease has begun to leave the cities and permeate indigenous, rural areas.5 A team led by Daniel Hernández-Rosete performed 91 interviews with Purépecha and Zapotec ICs, focusing on the health of indigenous women in the context of the Mexican concubinage institution.6 Under this cultural practice, some women are “stolen” (robadas) from their families at very young ages to be “concubines” (similar to the English concept of common-law wives) for men. Though many Mexicans accept this practice, it often creates dynamics of hyper-masculinity, machismo, and power domination in concubine relationships. The 91 interviews included 24 women in concubinage and 29 indigenous migrants.
This project was qualitative and, as such, yielded no objective data on cases of HIV infection. Rather, the researchers aimed to learn about the interrelation between migrant workers, their relationships with their wives, and HIV/AIDS. In that vein, they found that many transient workers insist on having unprotected sex with their concubines upon return, in an attempt to keep the women dependent on, and therefore faithful to, the men through pregnancy. The heavily machismo culture prevents many women from resisting, even those who suspected their partners of engaging in sexual behavior abroad and acknowledged the danger this posed to their children’s health as well as their own. In addition, though the concubinage system carries less stigma than the word evokes in English, concubines still have a diminished social support structure. Over time, this system has caused these women to become “wrapped in a spiral of isolation, economic dependency, and domestic violence that places them in situations that diminish their ability to prevent and treat HIV/STIs.”
Though HIV/AIDS in indigenous communities mainly revolves around a simple lack of attention, the Community HIV/AIDS Mobilization Project (CHAMP) has alleged that the ICs in Oaxaca, Mexico, have been actively repressed by a corrupt government.7 The article claimed that an organization called Frente Común Contra el SIDA discovered that the state AIDS council, COESIDA, was treating indigenous patients improperly (or not at all) and under-reporting rural AIDS cases. It quoted the journals of late AIDS activist Bill Wolf, who pointed to a suspicious relationship between COESIDA’s director and current and past governors. Wolf also claimed that during the disruptive 2006 strikes in Oaxaca, the government forced him to sign an agreement “to cease activities concerning HIV/AIDS.” Wolf also alleged that, even more reprehensibly, the government attacked a Frente-run condom supplier in a mafia-like scenario. Though some of the details of the allegations seem unverifiable to say the least, the simple truth remains that governments are not doing enough to address HIV/AIDS in their indigenous communities.
The relatively well-studied case of the Garífuna in Honduras represents another important exception to the trend of an epidemic ignored. Numerous researchers have undertaken projects with Garífuna ICs, calling attention to the specific dangers they face. However, one should not interpret the attention garnered by this particular IC as evidence that HIV/AIDS is being adequately addressed in indigenous populations. Rather, this case stands as a testament to the need for further development of IC-targeted HIV/AIDS policies. For instance, an article in the Honduran news-source El Heraldo agreed that the Garífuna HIV/AIDS situation is well known, but only because the Garífuna is one of the very few ICs “subjected (sometidos) to evaluations and studies related to the virus.” The author went on to point out that “there exists no material about HIV in indigenous languages” and that, specifically in Guatemala, only 55 percent of infected indigenous peoples had access to retrovirals.8
A 1998 survey of 310 Garífuna by the Honduran Ministry of Health found 16 percent of those aged 16-20 to be HIV positive, compared to only 5 percent of the same age group among the general population.9 A more recent study10 showed a slightly lower HIV rate in this IC, 4.5 percent, but it does not contradict previous data since the median age of participants was 30. 12 percent of the male participants reported having received money for sex in the past year. This finding is interesting, in that it is rare for such a high percentage of men to be involved in sex work.
Miriam Sabin reported in 2008 on a project her team had organized to analyze Garífuna risk behaviors.11 They found that many Garífuna associated condoms with HIV, but in a way that stigmatized their use rather than encouraging it, even though condoms were readily available. For example, the study found that most condom purchasers are “foreigners or men from Honduran cities going to Garífuna communities to have sexual relations with local Garífuna women,” negatively characterizing those who use condoms and making their use less likely among the general IC. In addition, it revealed an alarming number of formidable misconceptions held by the community when it came to HIV/AIDS, such as: “persons who look healthy do not have HIV/AIDS” and “youth are too young to have HIV/AIDS (and thus are sought out as sexual partners).” Finally, the report recommended that future HIV/AIDS policies for Garífuna focus on educating traditional healers, as it explained that they “may be sharing incorrect HIV prevention messages” such as selling ‘cures’ for HIV/AIDS.
The Maroon ethnic group in Suriname demonstrates a similarly unequal rate of HIV, though like most ICs it has been the subject of far fewer studies. The limited statistics that exist on the issue reveal that, due to the aforementioned risk factors inherited from colonialism, in 2003 “though the Maroon population represents only 10% of Suriname’s total population, 17% of the [HIV] cases occur in these communities,”12 other estimates pushing the mark past 20 percent.13 The World Health Organization reported that, as of 2005, the Kuna, a Panamanian IC, had an HIV prevalence that was 45 percent higher than the general rate.14 A separate Panamanian report concurred, observing “a higher rate of incidence [than the 12.1 per 100,000 generally] in…areas of high percentage of indigenous population, such as: Comarca Kuna Yala” with 16.3 per 100,000.15
As the tragic news story on a malaria-afflicted Yanomami IC introduced this topic, grim news about the Yanomami and HIV must unfortunately close it. In January of 2010, Brazil’s National Health Foundation (FUNASA) confirmed the first official case of HIV amongst its Yanomami population.16 However, it reported not one, but 28 cases in the northern state of Roraima, the majority of which were women. Like the malaria case, invasive gold miners working illegally in Yanomami territory (garimperos) have brought diseases like HIV/AIDS to the population, which was previously protected by its extreme geographical isolation. What is more, local experts have accused the Brazilian government of covering up an HIV/AIDS crisis in Amazonia. Neil McKenna raised this issue almost 20 years before this announcement in a 1993 article entitled “A Disaster Waiting to Happen.” In it, he referenced a number of alarming statistics, such as high rates of prostitution (among girls as young as 11 years old), and STI rates of 20 percent among garimperos. To conclude, McKenna quoted the founder of the Amazonia AIDS and Health Project, in regards to HIV/AIDS in the region: “The tribes of Amazonia are an endangered species: they’re facing extinction.”17
Call to Action
Clearly, the international HIV/AIDS activist community needs more data on this issue in order to develop effective long-term policies. Yet, even from the limited available data, one thing is certain: if Latin American officials do not begin to address HIV/AIDS in indigenous communities swiftly, purposefully, and with the intention of incorporating culture-specific risk factors, the death toll in Indo-America could become catastrophic. Accordingly, this work concludes with an international call to action. It is to be hoped that NGOs, aid networks, governments, and individual activists will answer this call and address the plight of Latin America’s indigenous population before it is too late. There is simply no excuse to continue ignoring this problem.
References for this article are available here
GEORGETOWN, Guyana, Friday June 25, 2010 - Guyana's Prime Minister Samuel Hinds has called for closer collaboration among public and private sectors and civil society in the fight against HIV/AIDS which continues to be a major public health challenge globally and in the Caribbean.