The spread of HIV/AIDS depends on, and exposes, every weakness in society. It spreads if there is poverty, illiteracy, lack of public health, if women do not have reproductive rights, if the use of alcohol and narcotics is high and widespread, and if corruption becomes part of daily life. The last, corruption, also precludes the possibility of adequate response by the government or the bureaucracy. It is for these reasons that HIV/AIDS is not simply a medical disease but also a social one. In this article I would like to bring to light some less frequently discussed behaviors, social patterns, and practices that are fueling the spread of sexually transmitted diseases, of which Hepatitis B and C, and HIV/AIDS are devastating to the individual and the society. I will also discuss two very different examples of successful intervention and recent developments in treatment that provide a glimmer of hope in the global fight against HIV/AIDS.
India has a very large migrant work force, both industrial and agricultural, estimated at over 200 million, and increasing in numbers due to the growing population. Furthermore, every natural disaster (Orissa cyclone, Rajasthan drought, Bhuj earthquake) displaces people and adds to the ranks of the migrants. A majority of those on the move are men who work under harsh conditions to save as much as possible for their families. Their life styles and conditions expose them to alcohol and drug addiction and to risky sex. They return home sporadically, often carrying diseases to their spouses. This migrant labor force is very often served by a community of sex workers, that is itself migrant and indistinguishable; many cities do not have well-defined "red-light" areas which serve as focal points for sex work. Reaching these sex workers is, therefore, hard; their education and empowerment remains at the same level as that of the work force at large.
It is an open secret that Karol Bagh area in New Delhi is the focal point for sex workers from Russia and eastern Europe. (Other metropolitan cities also have their analogue areas and risk populations, like trips to Thailand, call-girls, college students, etc.). I have often heard mentioned the thrill of a joust with blue-eyed, blond, sex goddesses; people are clearly oblivious of the high rates of prevalence of Hepatitis and HIV in this group, or are willing to take the risk. The pattern of operation of these sex workers is that they smuggle goods into India, work as high class call girls while in India, and then smuggle Indian goods and narcotics when going back. One can only wonder who their clients are since their evening charges are higher than the monthly salary of 99 percent of Indians. Unfortunately, lack of political will and corruption is preventing adequate intervention.
India is sandwiched between the two major heroin producing areas of the world -- the golden triangle (Myanmar, Laos, Thailand) and the golden crescent (Afganistan and Pakistan) -- which account for roughly 95 percent of the world's heroin. India itself produces significant quantities of opium, hashish, and ganja. Historically, the use of these narcotics has been a part of the life of rural Indians, blue collared workers, and urban slum dwellers. They have used it as part of evening entertainment, relaxation, and community activities. What is different today is the amount, variety, and toxicity of drugs available. For example, opium use is a widespread and huge problem in the districts of Punjab bordering Pakistan, and in Rajasthan west of Jodhpur. The concentration of narcotics in chewing tobacco and "gutka" is growing, and the number of people using them throughout the day is also growing. Intravenous use of heroin has already resulted in an HIV crises in Mizoram, Manipur, and Nagaland. There is growing incidence of IV heroin use (and of other opiates, tranquilizers, and sedatives that are easily available from many pharmacists) amongst school and college students in all major cities and, I discovered, widespread in Punjab, Haryana, and Rajasthan. This growing threat of drugs is, in itself, a nightmare for the nation and needs a major intervention program, but coupled with HIV it will be devastating as demonstrated by the experience in Mizoram, Manipur, and Nagaland. The authorities are aware of the severity of the problem in the border states, however, lack of political will and corruption has, and is, preventing adequate response to the widespread drug problem.
In the affluent classes evening entertainment is synonymous with hours of intensive drinking. The quality and quantity of single malt scotch consumed has become a status symbol. It should, therefore, come as no surprise that younger and younger children are imitating their parents and elders, and for them risky behavior includes alcohol, drugs, and sex. (A very high correlation has been observed between these three risky behaviors). These children are often left without responsible supervision and with ample funds for days at end and while the parents are on business trips. Sexual experimentation, with HIV ever waiting, is proving deadly for many. Alcohol use amongst the poor has reached nightmarish proportions; the government, mindful only of the welcome increase in taxes collected, is seemingly oblivious of the eventual cost to the society and the nation.
The increasing reliance on television, alcohol, and gambling as the most common outlets for stress and tensions, and the predominant form of entertainment is a devastating social behavior with far reaching consequences. For example, it has become an underlying cause of risky sexual behavior. To counter this ``way of life'' requires development of alternate forms of entertainment, and the awareness on why the constructive use of leisure time is a necessary life-long habit (life-skill) that needs to be developed early in life. (Possible activites include voluntary community improvement programs, spending more time with children, reading, sports and other outdoor activites). Facilitating such a change in lifestyle is a Herculean task considering that a significant fraction of a society of 1 billion has already become addicted to television and alcohol. The problem of drug addiction, however, will only become worse if people do not develop such life-skills.
It has become amply clear that in India's middle and upper classes, the onset of sexual experimentation and development of risky sexual behavior is occurring in mid-to-late teens. The most vulnerable time being the transition from school to college, especially amongst boys and girls from rural backgrounds going to colleges in cities. Consequently, awareness and intervention programs have to begin in schools and before risky behaviors become addictive habits. In my experience, schools are very open to providing awareness, but are relying on external speakers since their staff is reluctant and/or un-prepared to speak on relevant issues of sexuality and sex. Thus, the exposure is sporadic, hurried, and inadequate; only a fraction of the senior classes attend a given session and the information is expected to trickle down to the rest, or they must wait for the next speaker who may come months or years later. This is true even in the very elite schools of India which have English as the medium of instruction; a language that possesses a clinical vocabulary on sex. In most Indian languages the lack of such a vocabulary has attached a perception of vulgarity to discussions of sexuality, reproductive health, methods of birth control, and sexually transmitted diseases. As a result most students (I would say well over 90 percent of the total students in India, and all those not able to go to school) still do not get adequate information from reliable sources -- parents, trained teachers, or counselors.
On the treatment front there is very good news. The year 2001 has already provided the world with two miraculous gifts, whose resonant application can start to make a difference immediately. First, is the growing widespread acceptance of the Brazilian experiment -- providing Highly Aggressive Anti-Retroviral Therapy (HAART) to all HIV/AIDS patients. This has resulted, in Brazil, in holding down the rate of new infections at the 1995 level, and given a life to those infected. (A summary of the Brazil experiment can be obtaine from the New York Times). The second is the bold offer by the Indian Pharmaceutical manufacturer CIPLA to provide the cocktail drugs (three drugs including reverse transcriptase and protease inhibitors) at cost (\$1200 to wholesalers, \$600 to Governments, and \$350 to non-profit charitable organizations like Medecins Sans Frontieres). Details of the CIPLA offer can be obtained at CIPLA OFFER.
The above two breakthroughs, while being landmarks and essential in the fight against the spread of HIV/AIDS, are, by themselves, not enough. For example, most of the estimated four million Indians infected with HIV are not aware of their status. In fact, only a few percent are. So, in view of the long term solution, having HAART available is not very helpful unless we have the capacity to prevent infections or, if they happen, to intervene very early. Given the non-specific symptoms of HIV infection in early stages, which may last years, there is no motivation for the masses to seek the specific blood test unless the awareness levels are very high. Today, most HIV infections are being detected at very late stages when serious opportunistic infections force the poor and the marginalized to seek medical help. Diagnosis late in the progression of the disease has two disastrous consequences. First, the continued risky behaviors during the time of the undetected infection put others at risk, and second, since HAART does not undo the damage to the body and the immune system already caused by the virus (HAART significantly reduces further degeneration by reducing the viral load to negligible amounts and hence the transmission rate), late detection means living with a highly compromised system even if HAART was made available.
Even with CIPLA's offer there are still remain problems of implementation for which there seems to be no political will. At \$350 per year, the cost to Indian Government to treat the roughly 4 million infected would be over two billion dollars per year once delivery and test costs are included. This amount is roughly eight times the FY2001 yearly budget of the Ministry of Health, Central government. As a result, I do not foresee the Indian government acting on the CIPLA offer in the near future unless the price drops by another factor of ten. Their concern may be that if they provide free drugs for HIV, then they will have to provide free drugs for all life-threatening communicable diseases. My contention is that they should and must provide drugs for all serious communicable diseases and make health a national priority. Those in power need to study the Brazilian experiment, and if nothing else, read the New York times article mentioned above. Lack of action by India, to my mind, is a clear example of a short sighted policy since, today, a very effective program can be started for a much smaller amount as only 3-4 percent of the estimated infections have been diagnosed.
Today, there is much debate whether India has the infrastructure in place to administer HAART. In my opinion the answer is clear and simple -- we need to start providing the drugs today even if the necessary infrastructure needs development. Today, the majority of doctors are decoupled and disengaged from the HIV/AIDS crises because they feel powerless -- there is nothing they can do to help the infected. Making drugs available to them to admister will lead to their becoming engaged, learning about the disease, and thus providing the infrastructure that is arguably missing today. It will also go a long way in removing the stigma associated with the disease, give a life to those infected, and allow many of the HIV+ to become peer educators.
There is good news on the vaccine development front also. After years of pessimism and setbacks, the new influx of money from government and non-government sources has created a number of very large and international collaborations who are investigating/developing/using innovative techniques for making vaccines (for a summary on the status of vaccine development see the article by Jon Cohen in March 2 issue of Science magazine, Science 2001 291:1687). While there are many new developments, new ideas, promising directions, and candidate vaccines, the fact remains that there is no vaccine at this point of time. Also, unless the vaccine has very high efficacy (over 80 percent), awareness leading to behavior changes will continue to be essential. I feel that it is essential to proceed by emphasising prevention under the assumption that there will be no vaccine for the next ten years at least.
Societal response to build the capacity to spread awareness, to provide HIV testing, pre- and post-test counseling, and to improve the monitoring of blood in blood banks, is slowly gaining momentum. For the purposes of illustration I will discuss two very different examples of social intervention on health that I am familiar with. During my recent visit to India, I had the good fortune to interact with Arpana Research and Charities Trust near Karnal in Haryana, and Association Francois-Xavier Bagnoud (FXB) in India.
Arpana Trust is a charitable hospital, and a village outreach program. It is part of a religious organization (Ma's ashram) and draws its inspiration from it. Over the last twenty years it has built an excellent reputation amongst the surrounding communities, and now provides health care in 35 surrounding villages. Its main medical facility specializes in maternal issues and in eye care. It is equipped with the latest technology and staffed by enviable doctors. The institution is so unique that I was prompted to ask the Director, Dr Ela Anand, why the lines of people waiting for care, seen at all hospitals, were not present. The reason, she said with a smile, is that we have a very strong village outreach program and most of the day to day issues are taken care of at that level and early so that many serious complications do not develop. She then went on to explain how they have involved the villagers in water management programs; never providing anything for free but always making villagers partners. The most difficult program, which the staff is also the most proud of, has been the payback of microloans given to women, and their success in training the village women to manage money and learn to trust and use banks to accumulate savings. My final question to her, in order to understand risk factors for HIV, was -- what is the incidence of sexually transmitted diseases (STD)? At this she shook her head and said that the village women do not come to them for STD treatment -- their sense of shame is too great. They go to quacks and so called venereal disease specialists where they feel anonymous, or suffer PID in silence. What the hospital is seeing increasing numbers of are young women coming in for treatment for sterility. She suspects that the underlying cause, in most cases, is STDs, but due to ignorance and sense of shame the women come to the hospital too late for her to reverse the problem. This experience of Arpana is a clear statement that progress in female reproductive health and their empowerment to avoid STDs is perhaps the most significant indicator of human development.
FXB India is a non-profit organization with headquarters in Switzerland and who now have a major effort in India. They started work on HIV in Rajasthan in June, 2000. In this short time they already have a functioning testing and counseling center in Sumerpur in Rajasthan, an outreach program, have developed a collaboration with the blood banks including the zonal blood bank at Umaid hospital in Jodhpur, and are now rapidly duplicating this success across India. The novelty of their approach is to build capacity rapidly by identifying "leaders" all over India and empowering them to build a program similar to their Rajasthan experiment, rather than waiting to refine every detail. To supplement the local expertise, they are inviting an international team of experts to provide the latest training in counseling, evaluation, and capacity building. The program is being developed with the clear realization that the infrastructure has to be robust and resilient enough to last the two-three decades that such programs will have to be in place to combat HIV even if a cure, or less than 100 percent effective vaccine, is found in the next ten years. There is no doubt that such a program requires significant funding, however, society as a whole has to accept the need, and bear the responsibility for, generating this if they wish to get rid of the scourge of HIV/AIDS.
I believe that having such different organizations like Arpana and FXB India, and the whole range in between, is healthy and essential. What is also essential is to develop a network linking them so that experiences can be documented, shared, and evaluated. We have much to learn from each other and the time is short.
There are many other excellent organizations working hard to stop the spread of HIV/AIDS and raise social awareness. However, it would be naive to assume that India has finally developed the infrastructure to deal with the crisis. My feeling is that we are just finally beginning. The efforts of organizations dedicated to HIV intervention, like FXB India, need to grow by at least two to three orders of magnitude and become far more cohesive.
The task of dealing with societal issues and the consequent risk for HIV/AIDS is Herculean and overwhelming. Today, adequate intervention requires mobilization of a significant part of society. Many more caring people must join the fight and be empowered by a much larger budget, both from the government and from private individuals and corporations. With current levels of effort, the HIV infections will still continue to grow. There is optimism provided by the recent developments, but this optimism will prove disastrous if it leads to complacency.
Rajan Gupta