Hear No AIDS, See No AIDS, Speak No AIDS

AIDS, until recently considered a problem of poor African and affluent Western societies, is very much a South Asian problem. As the epidemic engulfs the backwaters of Asia, health workers will be unable to cope with persons requiring specialised and complex care. In India, AIDS has brought not only fear of the disease, but also confusion and dissatisfaction about how the epidemic is being handled. Nepal does not have a foot in the right direction, either. Meanwhile a potential disaster is in the making as Nepali women carrying the AIDS virus return home from the brothels of Bombay.

Since the first cases of AIDS were reported in 1981, health professionals have been increasingly concerned about the unprecedented dangers this disease poses. But many people have tuned out, deluged by sensational coverage of the disease in the media. This is unfortunate, because AIDS still has the potential of overrunning all of the Third World.

In African countries the prevalence of AIDS is nothing less than tragic. Other Third World countries would be living in a fool's paradise if they thought they could escape the grasp of AIDS. As no cure is available and people lack the knowledge of how the disease is spread or how it can be prevented, AIDS will not bypass any region. It is therefore urgent to put public information campaigns into high gear and prepare public health institutions to tackle the most dreaded disease of modern times.

India, with its large and proficient medical profession and public health administration, has a mixed record in confronting AIDS. There have been glaring instances of AIDS patients being mistreated. But at least some treatment facilities exist in the Indian metropolitan centres.

By contrast, Nepal is totally unprepared to handle AIDS. Should the HIV virus, which causes the disease, find an easy way to enter Nepal in large volume, the country will head into a public health disaster. The fact that HIV has not inundated the country so far is the very reason to immediately start taking measures: through public information campaigns, medical research, epidemiological surveys, and long term planning of AIDS treatment.

Besides the public health disaster that would overtake Nepal and all other poverty-stricken hill and plain regions that "export" prostitutes, what about the psychological trauma that the patients face, the cost of treatment, the training of medical personnel, the gearing of medical facilities? Is it fair to ask the medical professionals to focus on AIDS, a disease that is not yet a crisis when there arc so many other medical priorities to contend with, from high child mortality to diarrheal diseases, malnutrition, measles, malaria et cetera?

MESSAGE FROM AFRICA

It took many years for doctors and public health professionals in Europe and the United States to begin to comprehend the complexity and magnitude of the disease. Until recently, they considered the disease confined to certain groups of people, particularly the homosexual community in California and the intravenous drug abusers in inner cities, especially New York.

In the mid 1980's only, the AIDS pandemic was recognised. The disease could no longer be confined to groups of people with "high risk behaviour". It had begun to spread among the general population. The World Health Organisation (WHO) approved a Global AIDS Strategy in 1987, forcing many countries to take a more serious look at the disease. Still, it remained a disease of the developed countries and of Africa.

According to WHO, by May 1990 there were 650,000 AIDS patients worldwide, and half were from Africa. One out of every 50 persons in south Saharan Africa carries the virus. Unlike in the United States and Europe, AIDS has become a family disease, spreading largely through heterosexual transmission. Many children are being born with this disease. Experts recognise that today, that all over the world, the disease is spreading much more rapidly in the heterosexual community than among the gay community or among intravenous drug abusers.

The message from Africa to South Asia is that it could happen here. Nothing is saving us other than luck. Once AIDS begins to take hold there is no reason why its prevalence in India or Nepal should be any less than in Africa.

WHAT IS AIDS?

Acquired Immune Deficiency Syndrome (AIDS) is not a specific disease, but a collection of symptoms and conditions resulting from "Opportunistic infections". The Human Immunodeficiency Virus (HIV) is the micro-organism that causes AIDS. It has a special affinity for the immune system, systematically destroying the T4 lymphocytes, popularly called "helper T cells". The T4 lymphocytes act as "guards" against infectious agents, and stimulate the immune system to attack them. When enough of the T4 lymphocytes are destroyed, the immune system breaks down and AIDS symptoms appear. Patients then oscillate from one infection to another. With hardly enough time to recover from one episode they succumb to another attack. After several years of full-blown AIDS symptoms, the body is unable to sustain any more insults and literally gives up. A peculiarity of AIDS is that it afflicts people in their prime (20-45 years).

The incubation period (the time lag between HIV's initial entry into the body to the first signs of AIDS) is about 11 to 12 years. HIV is a "slow virus of an insidious onset".

Since time-bound data on AIDS patients is available mainly on patients in Europe and North America, one can speculate that the incubation period for victims of poor third world countries will be shorter. Especially due to the poor nutritional status, and an environment that is conducive to opportunistic infections.

HIV has been isolated from body fluids and tissues such as blood, saliva, tears, breast milk, bodily secretions and semen. However, the virus can be transmitted only in certain well-known ways, the main routes being sexual contact, infected blood (sharing of infected needles, and blood transfusion) and perinatal transmission from mother to the infant before or during birth. HIV is a fragile virus and, provided certain basic precautions are taken, it cannot be transmitted through casual day-to-day contact.

PREVENTION AND TREATMENT

Ordinarily, infectious disease can be prevented through vaccines, or treated. AIDS has no vaccine and no cure, and a breakthrough is unlikely in the near future. The therapeutic drugs prescribed to AIDS patients are meant to fight specific infections rather than to inhibit the growth of the virus itself. The drug known as AZT (AZUDOVUDINE) has been shown to slow the progress of the diseases by preventing the virus from integrating into the host chromosome. However, AZT is expensive and it has many side effects including bone marrow destruction. In addition, AZT is not widely available. The patent of the company that produces it does not expire until 1992.

 Responsible individual behavior is a must in preventing this disease, but sensible behavior cannot be expected from uninformed individuals. People must be convinced of the need to protect themselves and others from being infected by HIV, and to act accordingly. Nepal and India would be more productive if they began intensive country-specific and culture-specific public information programmes, than to focus on screening with imported kits and aid money just because it is done elsewhere.

While it may be easy to convince and motivate individuals who have not yet been infected by. HIV, it will take much time and effort to convince those infected to avoid infecting others, especially if their livelihood depends on continuing high risk behavior (prostitutes and professional blood donors). Infected women must be convinced that it is unfair to conceive children who are likely to be HIV positive.

Most countries focus on prevention, which involves screening. Firstly, "high risk" populations are screened for HIV positive cases. Secondly, blood and organ donors, as well as blood products, are screened. Pregnant women are also screened.

Before a country decides on any specific method to prevent AIDS, it has to make an intelligent assessment of the mode of HIV spread among its population. Taking the world as a model, 75% of the spread of AIDS is through sexual intercourse, 15% through blood products (transfusion, intravenous drug abuse), and another 10% through mother to child. Most of the spread is thus through unsafe sex.

"In India, the Gay population is not at special risk, like in the West", says Ashoke Rao Kavi, one of the very few Indian gays who is actively working for the gay cause. The spread of HIV in India was previously thought to be only in the promiscuous heterosexual community, and among professional blood donors. A recent report on the seropositive rates of intravenous drug abusers in Manipur, the hill state of Northern India, has changed this epidemiological profile. Thus, a blind focus on screening and testing without a well supported programme on public education will not contribute to the prevention of AIDS.

Unfortunately, India and Nepal, like many other developing countries, are already heading up the wrong path in AIDS prevention and treatment. They have chosen to spend their money mostly on testing persons (those with high risk behavior) and screening of blood and blood products, two activities which are easily done provided that there are financial resources.

NEPAL AND AIDS

According to WHO's 1990 data for Nepal, 17,141 people were screened for the virus. Nine tested I-11V positive, of whom three had AIDS symptoms and one had ARC (Aids Related Complex, not yet full-blown AIDS). The limited data shows that HIV positives are either expatriates (nationality unknown) or Nepali prostitutes who have found their way "home" from Bombay. No HIV carriers were identified among blood donors, pregnant women, or the "general population". So far there have been two AIDS related deaths. One Nepali girl died in Nuwakot in July 1990, and one westerner died in a Kathmandu hotel in 1988.

While the indication of HIV positives among those returned from Bombay is significant, on the whole, WHO data is suspect. Normally, the ratio of AIDS patients to those infected with HIV is between 1:50 and 1:100, in Nepal, the ratio is 1:2. That the data shows no HIV positive person among the general population sample could also lead to a false sense of security. Firstly, the cursory sample survey might have missed existing cases. Secondly, the constant high-volume population movement over the open border with India means that an AIDS epidemic in North India could immediately envelope Nepal as well. It is therefore important for Nepal to coordinate its AIDS strategy with India's.

While the AIDS virus can enter the country in many ways, public health professionals should immediately look into the possibility of the virus penetrating Nepal's hinterland through prostitutes returning from the AIDS-ridden brothels of the major Indian cities. HIV positive prostitutes would be the major carriers of the AIDS virus into Nepal, it can be safely said. Because Nepali girls are more "popular" among clients, they also have a higher prevalence of sexually transmitted diseases (STDs). This would also translate into a higher prevalence of HIV positivity. It is estimated that Bombay alone may have about 45,000 Nepali prostitutes. Even if it is 30,000, and 10% (and not 30% as widely reported) of the prostitutes in Bombay are infected, 3000 Nepali girls in Bombay alone would be carriers of the HIV virus at this very moment.

Most of the Bombay girls ultimately return to Nepali towns, if not to their villages. They thus become a source of infection whether they continue as prostitutes in Nepal, or marry and settle down. It is known that several HIV-positive girls [from Bombay] have returned to villages across rural Nepal and are assuming a "normal" life. One of them is reported to have a daughter who is also HIV positive. These cases have not yet made their way into the published "statistics'".

Since air links were established between Nepal and Thailand in the 1970s, Nepalis who visit Bangkok have mixed business with pleasures of the flesh. Earlier, they used to return with sexually transmitted diseases (STDs). Today, with HIV in epidemic proportions among Thai prostitutes (over 40% in some areas), airliners from Bangkok could well be bringing back sexual adventurers with HIV.

Migrant labourers from Nepal and other Himalayan states who work in Indian cities are also likely transporters of HIV. Many male migrants, alone in the big cities, visit prostitutes for recreation. If they originally came back with STDs (see Himal. July 1988), now many must return with HIV as well. Long and short-term Nepali migrants in India number in the millions.

Many AIDS cases might not even be recognised. Patients would be spared the despair of knowing they have AIDS. Dr. N. K. Shah, a Nepali who directs the Communicable Diseases Division of WHO in New Delhi says, "People in the villages will die without even a diagnosis. Everyone will think that they died of malnutrition. This may happen within the next 5 years, as the incubation period for our people will be much shorter."

Inspite of this, the AIDS Research and Control Programme in Nepal is a one-man show. Dr. B.L. Gurbacharya has been designated by WHO and the Government as the Principal Investigator of the Programme. He is supposed to conduct his AIDS duties in addition to his normal work as the Chief of Central Health Laboratory in Kathmandu. As a result, he says he devotes only about 25 per cent of his time to the AIDS Programme.

The epidemiological response of Gurubacharya's office to a possible AIDS flareup in Nepal has been confined to the one-time testing of blood and screening of high risk groups (the WHO study already mentioned). 'Ile Programme has published two booklets, a flip chart, a pamphlet targeted to Nepalis travelling abroad, some posters, badges and an AIDS summary book.

Most of the foreign visits by Gurubacharya and his staff have concerned diagnosis, nursing and management of AIDS patients. None of the workshops attended related to health education and AIDS. The overwhelming focus on treatment of AIDS is not proper, especially because Nepal does not yet have an epidemic and because such an epidemic can be prevented only through education. An educational programme aimed at villages on the prevention of the spread of HIV would be difficult, challenging, but absolutely necessary.

Surprisingly, not one non-governmental group in Nepal has shown sustained interest in understanding and combatting AIDS. Dr. Gurubacharya's Programme is the only (understaffed, under-funded and under-utilised) resource for AIDS in the country.

INDIA AND AIDS

Unlike Nepal, in India there are numerous organisations — manned by qualified doctors, social workers, counselors, and epidemiologists — working on the AIDS epidemic. However, much of the AIDS activity has been confined to the main cities, particularly Delhi and Bombay. Moreover, there is little coordination or trust among those involved in the AIDS field. Few have anything good to say about the other (see page 30).

Perhaps because the sheer size of its public health infrastructure and because of the fears of an African size epidemic on its lap, India is far ahead of many Third World countries in researching and responding to AIDS. Both the governmental and non-governmental sectors are active in implementing AIDS-related projects.

In late August, a massive "Health Education in AIDS" project was being planned by Bombay's Directorate of Health Services. It hoped to pool expertise from among the city's municipal corporations, governmental bodies and non-governmental organisations. Lintas, a top advertising firm, is to package the health message and organise the mass media campaign. The Tata Institute of Social Sciences is to design a scientific survey on the knowledge and attitude towards AIDS among a representative sample of the city's population. There is no saying how successful the Directorate's project will be, but it provides a rare example of good sense and cooperation in tackling AIDS.

While the Directorate works on the social and psychological aspects of the AIDS epidemic, the Indian Council of Medical Research (ICMR) carries out sero-surveillance work; it evaluates testing kits, and follows the natural history of the disease within India. The ICMR publications ICMR BULLETIN and CARC Calling, are invaluable for understanding the AIDS epidemic in relation to India.

There are many critics who feel that Indian doctors and public health institutions have little to be proud of. While there is some good work being done, much of it is geared towards screening "high risk" captive population who do not even find out their results.

There are incredible divergences in opinion about the rate of HIV positivity in Bombay, the prevalence of STD among high risk populations, and the ideal system of treating patients. While one doctor sues the blood banks for infecting the blood donors with HIV, others maintain that the blood donor population itself has high risk behavior that makes itself prone to HIV infection. When onw doctor insists that there is low prevalence of STD and HIV positivity among prostitutes, others say only a very select and unrepresentative group frequents his clinic. Nepali prostitutes in Bombay, some say, have a lower prevalence of HIV because of a better clientele. Others argue that more of them may carry the virus because these girls are more "popular".

An ICMR booklet for health professionals on "Standard Biosafety Guidelines" (June 1990) underscores that "with the application of universal precautions, no further routine isolation is necessary for HIV-infected patients". But that is absolutely not the case in reality, with the foremost hospitals in the country refusing crucial treatment on the basis of HIV positivity.

A HUMAN RIGHTS ISSUE

In the panic of handling a growing AIDS epidemic, the human rights and personal dignity of HIV positive persons can easily be undermined. If the improper and inhumane treatment of AIDS patients and HIV positive individuals in India and Nepal is any indication, increasing number of victims can expect only hostility, misconception and cruelty.

The unwinding tragedy of Rohit and Vineet Oberoi (ages 24 and 28), and Kavita Maharjhan (22 years) shows the excruciating times South Asia's future AIDS sufferers have, in store for them.

Vineet and Rohit, both hemophiliacs, received infected blood product and are HIV positive. Since 1975, they had been receiving treatment for their haemophilia from the Army Medical College in Delhi, one of the few places where this genetic disorder is treated.

Rohit was admitted to All India Institute of Medical Sciences (AAIMS) in April 1989 to treat a bleeding knee joint. When the hospital found him HIV positive, he was discharged immediately. Since then, every time he has visited AIIMS, Rohit suffers abuse from doctors and nurses who refuse to treat him. He faces discrimination only because he cares to inform the medical staff that he is HIV positive.

Vineet also faced discrimination when his blood was found to be HIV positive in June 1990. Immediately after, he had an attack of Pneurnocystis Carinii Pneumonia (PCP), one of the most common opportunistic infections among AIDS patients. He was treated with Difulcan, an imported drug which costs U$375.29 for a 30-tablet bottle. Vineet overcame the PCP attack, but because of lowered immunity has been advised to take the AZT, one year's supply of which costs U$8,000.

Meanwhile, the AMC has sent the Oberoi brothers registered letters telling them that they will not receive any hemophiliac treatment as they are HIV positive. The Oberois have had to establish a mini primary care centre in their own home. They treat each others' minor problems. Plastic bags, latex gloves, disposable syringes, and polar bleach have become household objects. But there is no knowing what will happen if their bleeding takes on emergency proportions, and they require specialised care.

Says Rohit, "I am not afraid of dying, but it hurts to see the way we are being treated. We are victims of the time. In a generation AIDS will be regarded simply as another disease." Unfortunately, the case of Rohit and Vineet is likely just the beginning of a scenario that will be repeated thousands of times in coming years.

In Kathmandu, Kabita Mahadhan with exposure to Bombay, was kept at the District Superintendent of Police's (DSP) office for two years, because she was HIV positive. Numerous letters by Inspector Purna Chandra Adhikari to heads of health sector, zonal commissioner of Kathmandu, the Teaching Hospital, and social service organizations proved futile. Kabita was confined to a "cell" where policemen shared their ration with her. She attempted suicide. After the April 1990 movement in Nepal, Kabita was freed and she has been working incognito in the AIDS research and prevention project through the offices of the Minister of Health.

In another instance, an HIV positive man, a westerner, went to Patan Hospital in Lalitpur. When he disclosed his HIV positivity status, none of the staff would go close to him. He got no treatment till one of the dentist proved brave enough to attend to him.

LOOKING AHEAD ON AIDS

While the AIDS work in Nepal is a one-man-show, India has numerous professionals vying to contribute to work towards the further understanding of AIDS. Both countries, however, find themselves at the same point in time when AIDS has made its presence felt but has not spread uncontrollably.

Health professionals in both countries should concentrate on a response to the AIDS pandemic that fits South Asian conditions. The response should be based on the peculiarities of South Asian society, and the peculiarities of AIDS — the psychological trauma it brings, the expensive treatment, the "hostility" of medical personnel, the discrimination against patients. For example, an appropriate response might be to start home-based care for AIDS patients. Such care might prove more economical and perhaps safer because of the presence of fewer infectious agents at home. The family would get involved, and the patient, would get love and support up until the very end.

There is a need for a pooling of resources on AIDS, both in terms of clinical research and public information campaigns. The screening of blood and blood products should be continued to maintain a safe supply, and voluntary screening of high risk population should be encouraged for research purposes as well as to let interested individuals know their HIV status.

Given that for the moment, in absolute terms, a very small proportion of the population is affected, AIDS education linked With health education and family planning would be more cost-effective. Innovative ideas should be used. For example, the yet uninfected people have to realise that not only is HIV a slow killer, but HIV positive people are like international prisoners, as at least 50 countries including the United States, West Germany, India, Pakistan and China have varying degrees of restrictions.

Discrimination against HIV positive persons is likely to encourage them to continue their high risk behaviour, such as prostitution, as a means of "getting even with society". A trusting, understanding environment must be created which will encourage people with high risk behavior to have their blood tested voluntarily. Because HIV carriers outnumber the AIDS patients manyfold, and it is this group of "healthy carriers" that are the main source of infection who should be given priority in counseling and health education. AIDS patients should be given, in addition to medical care, counseling on how to manage the disease both physically and psychologically.

The AIDS epidemic has provided Asian countries with a lead time of at least 6 years. It is important not to lose this advantage. Most of the lessons should be learnt from the developed countries, but application has to be catered to our own special circumstances. Also, in the urge to protect public health, the right of infected individual to receive the best care available, and the right to human dignity should not be undermined.

AIDS and HIV in Asian Countries, (WHO July 1990)

* 362 HIV positive cases in Manipur (mostly among intravenous drug abusers) not included.

Nepali girls often land up in Bombay unintentienally, and get forced into prostitution. Once they are "bought" to become a slave of the brothel keepers (gharwalis), escape becomes impossible. Savdhan is one organization that works to repatriate girls (especially minors) who are unwilling prostitutes. Vinod Gupta, the founder of Savdhan, has rescued 1631 girls since 1983. Two Nepali girls "Neelam" and "Kalpana" (16 and 17) have sought Savdhan's help. Their story is socking. Tricked by two Tamang boys in the name of jobs in Kathmandu, they have been prisoners at the red-light district of Falkland Road, Bombay, for the past four months. They each entertained 15 to 16 customers during the day, and were shuttled between two customers every night. Each earned, on an average, IRs800/day excluding tips, but received nothing. They were beaten by Gharwalis for resisting clients and were given shots if they suffered from overwork. The Bombay experience is one from which girls do not usually recover. They lose face, do not go home, and are trapped for the benefit of the flesh trade.

S.B. Dixit is an epidemiologist. Himal's investigation of AIDS in Nepal and India is made possible with support from the Panos Institute, London.