India’s AIDS Epidemic: Fourth in a Four-Part Series
By Mihir Gupta
In the summer of 2008, I traveled to northeastern India to study the impact of HIV/AIDS in rural and urban areas. With a team of social workers from the Indian government and several collaborating NGOs, I journeyed from inner-city alleyways to lush rural villages, on a variety of HIV/AIDS public health interventions. This series chronicles my encounters with several groups of people. Their narratives coalesce in a mosaic of experiences, each a function of time and place, but not far outside the definite contours of socio-cultural influence. The result is a snapshot of the impact of a devastating disease on a society and its core institutions; of chaos and uncertainty, but also of profound unity and hope.
Raju hobbles towards us on an improvised crutch made out of a sturdy tree limb. When I ask why he is injured, he points to his right foot and recounts what happened. Three days ago, he experienced a throbbing pain and swelling in his foot; there was no visible cut or sign of infection. The pain subsided over the next few days, but the swelling continued. Today his foot is swollen to nearly twice its normal size, feels as hard as the knob of his ankle and is slowly turning a deep reddish brown.
“You need to show this to a doctor,” I tell Raju. We add him to the list of individuals who have converged to visit our mobile health team, camped in this small village for the day. The list has reached almost one hundred names and shows no signs of stopping. Villagers continue to trickle into the clearing where we have erected a makeshift clinic. Our clinic has separate departments (each doctor is stationed beneath a different tree), an examination room (four bedsheets hung from bamboo poles) and a pharmacy (two hospital staff dispense pills stocked in a briefcase). We left the last trace of modernity, our Tata jeep, one mile away behind a defunct bridge and brought only what we could carry.
Raju’s foot trouble turns out to be a case of folliculitis that will turn gangrenous if he does not seek immediate treatment; if left untreated for too long, the infection could spread through his bloodstream and take his life. Raju’s case is the only one of its kind that we see, but the circumstances are hardly unique: a minor health problem (folliculitis can be caused by an infection in the follicle of a pulled hair) spirals out of control due to what are known as “ecological” factors: lack of education, delaying treatment, unsanitary water, malnutrition, etc.
Indeed, this young man who almost needed his foot amputated is hardly different from the dozens of children whose mothers tell us that they cannot see at night. The latter problem is caused by a Vitamin A deficiency whose symptoms include night blindness, and would be easily remedied by eating carrots or papayas – crops that could grow here easily but no one thought to plant. The list of easily prevented or remedied health problems goes on: severe anemia among menstruating women, sexual health problems caused by poor hygiene, and child mortality that, in some villages we surveyed, exceeded one in five children dying below age three. These individuals are victims of well-defined, treatable diseases, but more importantly of the ‘ecological’ parameters that define life in underdeveloped rural areas.
Diseases such as these that plague India’s rural community are often different from those affecting city dwellers. For example, cancer and obesity-related illnesses, which are prevalent in urban areas, are rarely seen in rural clinics. This, again, is attributable to ecological factors: many individuals die of infectious diseases like tuberculosis before they are old enough to contract cancer, or suffer from starvation and malnutrition before ever becoming obese. The asymmetry between rural and urban healthcare problems and outcomes underscores the drastic need for systemic change to uplift India’s rural residents, who comprise almost two-thirds of its vast population.
Uplifting India’s villages is also vital for combating diseases like AIDS that are much more prevalent in urban areas but are now breaching the increasingly porous border between cities and rural villages. AIDS and other infectious killers will flourish in villages where basic healthcare infrastructure is either nonexistent or ineffective, and healthy young men like Raju nearly die of a pulled hair. In one village our team visited, several individuals have already died of AIDS, but our surveys revealed no change in awareness about the disease or any significant medical response.
Unfortunately, many strategies for fighting AIDS that are routinely practiced in urban communities do not translate easily to rural areas. For example, awareness campaigns are extremely difficult due to illiteracy and unwillingness to talk about sexual health. But despite the differences, there is one redeeming aspect of the rural situation: the changes necessary to respond to AIDS are largely the same ones necessary to remedy the existing healthcare problems, which are rooted in the drastic underdevelopment of rural societies and economies.
In urban areas, the fight against AIDS encompasses awareness campaigns, empowering marginalized groups and updating the existing healthcare infrastructure. In rural areas, however, the more appropriate remedy is a holistic social and economic uplifting. This means addressing the asymmetries between rural and urban areas, and also between groups within rural areas themselves. For example, the way to stop the spread of sexually transmitted infections by migrant workers is to improve rural economies and give individuals an alternative to seeking work in already-bustling metropolises. Also, the gender imbalance in power and education must be remedied because, as several previous studies have shown, educating and empowering women in rural areas uplifts communities and improves healthcare outcomes.
The difficult question that arises is how to remedy these problems in ways that are both sustainable and respectful of rural communities. As one doctor on our team lamented, life (and death) in the villages has hardly changed over the course of his thirty-year career, despite technological advancements and enormous investments in rural welfare. The prevailing attitude among city-dwellers is to cast blame on the residents of the villages for their so-called “backwardness.” Villagers, the argument goes, are not making progress because they keep women uneducated and disempowered, malnourish their children (especially girls), avoid discussing topics related to sexual health, delay seeking care for routine ailments, and so on.
It is tempting to prescribe aggressive urban-style education campaigns as the remedies to rural ‘backwardness’ – but this is problematic for several reasons. First, the ‘experts’ are, in many ways, as short on information as the rural populations they study; as such, they are in no position to criticize villagers for being uninformed. For example, healthcare-related surveys of rural populations have been largely unhelpful in guiding disease prevention efforts. And even the most sophisticated data collection has failed to predict the trajectory of diseases like AIDS through rural areas.
Second, many years worth of educational efforts have failed to create meaningful advancements in all but the most exceptional cases. This should not be surprising because even Western countries, where awareness is in no short supply, have many preventable health problems caused by obesity, smoking and the like. Education, it seems, only goes so far towards changing individual behavior, even when it is a matter of life and death.
Finally, if India’s village communities truly are ‘backwards’ relative to their urban counterparts, this only increases the need for creative, grassroots solutions uniquely tailored to rural society. Educational formulations made by and for urbanites will likely be ineffective, and indeed they have proven so. One stark example of this failure is the common practice of counseling individuals who come to urban hospitals for AIDS tests and drugs. These counseling sessions are uncomfortable even to watch: counselors, despite their best intentions, struggle to communicate the concepts underlying viral infections, antiretroviral therapy and sexual disease transmission to individuals who lack even a middle school education and women who hardly discuss sexual health even with their spouses.
These difficulties inspire a great deal of exasperation and head scratching among India’s public health community, which has tried for decades to implement grassroots solutions to rural socioeconomic problems. One of our team’s social workers wondered aloud, “How do we help villagers help themselves? It would put me out of work, but we would save many lives.” The answer, luckily, lies in the programs, institutions and relationships that India’s public and private sectors have already cultivated in rural areas over the past several decades. However, these programs have failed in many ways to adapt to the changing reality in rural areas.
One such innovation is the Self Help Group. These are groups of ten to twenty women from the same village who contribute a small monthly fee towards a common pool of money that is stored in the Grameen Bank (founded by Nobel Prize Winner Muhammad Yunus). Group members then draw loans from the pool for expenses such as educating children, buying livestock or starting their own income-generating projects. One group that our team met used their savings to buy each member two goats and a cow, whose milk they now sell to generate more income for their families; several of the members have been able to fund their children’s education in this way. The group’s next project will be to stock their village pond with fish, which can also be sold on the market (this practice is now commonplace among villages who can afford the initial investment).
While this particular Self Help Group has created successful income-generating projects, the group we met in a neighboring village revealed that they have no plans for using their funds, and have had trouble keeping their group together. They had no knowledge of the other village’s highly successful project. The reason for this disparity between Self Help Groups in adjacent villages is that one received better guidance; social workers who organized the failing group several years ago never returned to the village to direct it, whereas the group in the other village maintained regular contact with social workers.
Beyond being poorly guided, Self Help Groups are also underutilized. The issue at stake here directly concerns women’s health. Interviews with several women in one village, including members of the Self Help Group, revealed widespread occurrence of genital pain (likely due to poor hygiene). The women do not discuss the matter with their husbands, but they do discuss it with other women, especially at group meetings. The Self Help Group is thus an important forum for women to raise, discuss and resolve their concerns.
Unfortunately, no social workers we knew of had ever tried to use Self Help Groups as conduits for health-related interventions. Doing so would be wise, and should in fact be a top priority for public health workers serving rural areas. Self Help Groups have shown their ability to change rural society by empowering women economically; this economic empowerment ought to be accompanied by social change as well. For example, Self Help Groups can be mobilized to provide young girls in villages with equal opportunities, and to educate young mothers on proper childcare and nutrition to lower child mortality. Men’s Self Help Groups can also be created to empower the indigent, revitalize rural economies and encourage men to become more involved with childcare and become more open to discussing sexual health with their spouses.
Working through village-based institutions like Self Help Groups will likely be much more effective and sustainable than trying to impose or deliver new ideas through external actors. Village leaders can serve as liaisons to outside public and private groups, but villagers themselves ought to discuss important issues and come up with creative, grassroots solutions to them in which they are fully invested. This kind of community-based, deliberative process is vital to strengthening and adapting the fabric of socially conservative societies like India’s to ever-changing threats, including diseases such as AIDS. India’s rural community can ill afford to stay uninformed about AIDS and other public health concerns, or fight them with social stigma instead of progressive action. Unifying rural communities, and especially women, through locally based institutions is the best way to ensure the latter wins out.
Even the success of village institutions, however, does not mean that they are a solution to all rural problems. Outside institutions, especially hospitals, remain vital service providers to villages across India, but they also suffer from many shortcomings. The most apparent problem is a lack of resources to combat new public health problems such as AIDS in the farthest-flung villages. One Community Health Center that our team visited is a perfect example of this. The Center is a government-run hospital that serves almost one-quarter million rural individuals. It is staffed by several physicians and specialists, and is equipped to perform some surgical operations in addition to routine vaccinations and infectious disease treatment. However, the hospital has no HIV testing supplies, AIDS counseling or antiretroviral therapy. Patients who need them must travel to the city, which is half a day’s bus ride away, a journey few can afford to make.
The lack of HIV/AIDS-related resources at this hospital is not due to low demand; in fact, the doctors claimed to have found several HIV-positive patients in the past year alone, and have requested HIV testing supplies for the hospital. However, the state-level authorities have been unresponsive, and continue to concentrate resources in urban areas. It is unclear what – perhaps a shortage of testing supplies – is preventing rural hospitals from obtaining these resources, but it is abundantly clear that they will be necessary before long.
Government healthcare facilities such as this Community Health Center also have less visible problems than resource shortage; these other problems directly concern the relationship of the healthcare infrastructure to the rural community it serves. One major unaddressed issue is the fact that rural individuals are increasingly choosing private sector healthcare over government services. Many believe that the reason for this trend is that government hospitals are impersonal, ineffective, and lacking in important services. This is true to an extent, but there is another factor driving patients away from government services, namely, unethical behavior by doctors. Several individuals whom our team interviewed reported that doctors in government hospitals correctly diagnosed their illnesses, but would not write prescriptions so they could get the drugs they needed. Instead, the patients were referred to private clinics staffed by the same doctors who had diagnosed them in the government hospital. The doctors created these private clinics in order to make patients pay for the drugs and services they would receive for free in the government hospital. In the private setting, unlike in public hospitals, serving more patients translates into more income for the doctors.
This practice, if discovered, is grounds for losing one’s job, if not professional licensure. Each time it occurs, an opportunity for the medical community to truly engage with the society they serve is exchanged for a quick profit made off a patient who is unlikely to ever trust the public healthcare system again. Practices like this “double-dipping” stand in the way of efforts to fight diseases like AIDS that quickly infiltrate the rift between healthcare providers and the individuals they serve. Indeed, these acts of individual irresponsibility may be as harmful to rural progress as the drastic underdevelopment and social conservativeness that have reigned for decades.
There are, of course, several legitimate reasons that patients choose private healthcare services over public ones. One main reason is that a village-based medical practitioner, who, although lacking formal training, makes accurate diagnoses, administers a variety of prescription drugs, and is a vital part of the community he serves, often delivers private services.
Our team met several of these village-based practitioners – elderly men who ride through the village on a bicycle making house calls, delivering babies and checking on infants; whose house all the villagers know how to find; who recount with startling clarity the malaria and tuberculosis infection trends in the village over the past decade. Most of these practitioners perform their duties as a public service, charging their patients only what they can afford to pay.
The doctors who staff the government hospitals are aware of these practitioners’ existence, and even cast a blind eye on their somewhat questionable practices (such as obtaining and administering prescription drugs without an MD) because of the benefits they provide to rural villages. However, there is virtually no coordination between government doctors and village-based practitioners. Providing the latter with some degree of uniform, semi-formal training to confront the most pernicious rural health problems would likely benefit both parties and the rural community. Such coordination would also enable a unified, large-scale response to diseases like AIDS that require leadership from the medical community.
The list of necessary remedies to rural healthcare problems goes on, and the specific steps to be taken are a source of constant debate that will only grow more intense if infectious diseases like AIDS continue their destructive course. There are, however, common underlying themes, the most important of which is to create village-based socioeconomic advancements as a platform for improving healthcare outcomes. Many of the required solutions are simply matters of taking simple steps like planting the nutritious crops that could stave off night blindness – that is, planting the right seeds in an environment that will readily support them. India’s rural community is not inherently ‘backward’ or hostile to progress. Rather, there is an inherent asymmetry between the remedies that work in urban areas as opposed to rural ones; these differences must be recognized and respected.
The good news is that many programs and institutions are already in place that can revitalize rural society and prevent AIDS or another future disease from achieving its full destructive potential. The important task now is to cultivate and adapt these institutions in responsive, forward-thinking ways. This includes, but is certainly not limited to, mobilizing Self Help Groups and strengthening the relationship between government hospitals and rural communities.
The twenty-first century ought not see the health of rural individuals in any country, especially one as rapidly evolving as India, suffering as a result of their circumstances. Every young man who dies of untreated folliculitis, every child with night blindness, every woman who faints regularly due to menstrual blood loss, scars the legacy of India’s otherwise-progressive national healthcare policy and medical community. This policy and this community will be tested in the days ahead if AIDS adds further strain to the already-overwhelmed rural social fabric. But if rural society, economies and healthcare infrastructure are properly bolstered, the lives of millions may be saved.
Please note that all names and personal references have been modified out of respect for subjects’ privacy. The previous installments of this series were published in the September, October and November issues of PERSPECTIVE.