India’s creeping plague

The initial response of South Asian governments to AIDS when it appeared two decades ago was to hide behind the mantle of 'Asian morals' — a strategy that succeeded only in obfuscating knowledge of the disease's deadly, unchecked spread. After acknowledging the problem in the early 1990s, efforts to treat the disease's victims and prevent further infections have been hampered by a lack of reliable data and a glut of ill-conceived or under-funded programmes. India, the largest country of South Asia, is consequently burdened with a larger HIV/AIDS problem than the others. How many AIDS cases are there in India? Should the focus be on prevention or treatment? And, most importantly, in what direction is the disease headed? Policy failures aside, these and other basic questions remain.

It is appropriate to begin an article on AIDS (Acquired Immune Deficiency Syndrome) in India by asking lots of freewheeling questions and presenting 'facts'. Here they are:

Approximately 42 million people the world over are supposed to be infected with HIV (Human Immunodeficiency Virus), the causative agent of AIDS. Almost one million people in Asia and the Pacific acquired HIV in 2002, bringing to an estimated 7.2 million the number of people now living with the virus in this region — a 10 percent increase since 2001. A further 490,000 people are estimated to have died of AIDS in the past year. About 2.1 million young people (aged 15-24) are living with HIV. India's national adult HIV prevalence rate of less than one percent offers little indication of how serious the situation facing the country is. An estimated 3.97 million people in India were living with HIV at the end of 2001 — the second highest figure in the world, after South Africa. One Indian is infected with HIV every minute. 10 percent of the world's HIV cases are found in India. Furthermore, about 60 percent of the country's population, the highest number of cases worldwide, is supposed to have tuberculosis, a disease that often preys on HIV-weakened bodies.

How are these statistics arrived at? Is the AIDS scare being blown out of proportion? Some practitioners of ayurvedic medicine say that it is a disease that is mentioned in ancient medical texts. If that is so, why is it only in the last two decades that one has been hearing about it?

What is the ground reality of AIDS in India? What projections are being made for AIDS in India? Because there are no early-stage symptoms of AIDS, what does one look out for as an early warning so that the disease can be nipped in the bud? In a word — nothing. For one thing, the infamous window period of the disease, in which it lurks in the system but gives no indication of its presence for as long as a decade, does away with the notion of an early warning system. The virus could be in you and yet manifest itself only years later. Meanwhile, depending on your sexual lifestyle, you could be aiding and abetting its spread. In any case, early warning is ultimately meaningless since there is no known cure for the disease. The means of its transmission are known. But there is no treatment and, still, no cure.

Then there is the issue of funding — do funders know what they are funding? If the enemy is not known how do you choose your weapons?

Now for the answers: there are none. This illustrates the bizarre state of affairs in the existing corpus of knowledge about AIDS. Needless to say, the approach to dealing with AIDS is a reflection of existing knowledge — bumbling, and burdened with an unfortunate pretence of knowing the general direction being taken.

Denial, stigmatisation and discrimination: these words sum up the social history of HIV/AIDS. They also are the reason for the remarkable manner in which the disease has managed to disregard every boundary and reach its present pandemic proportions.

First responses

Before plunging into basic questions about AIDS policy that have been asked by public health experts in India, a quick history of AIDS in the Asia-Pacific region has to be considered so as to understand the hows and whys behind the AIDS pandemic.

It is an accepted fact that because of various cultural prejudices and taboos facilitating denial, HIV/AIDS has grown into a complex maze — an assembly of myriad small epidemics evolving side by side. Each has its own characteristics that are constantly evolving, baffling the world of medicine and fuelling the virus's spread.

In 1986, the World Health Organisation (WHO) adopted a three-pronged approach to analyse the complexity of the problem. According to the WHO's assessment at that time, Australia and New Zealand fell into the first pattern of the epidemic, ie early and rapid HIV spread through homosexual contact and injecting drug use. Other Asian and Pacific countries conformed to the third pattern — late introduction of HIV, low levels of HIV prevalence, and infection traceable to contacts with infected people from outside the region. However, no country in the region conformed to the second pattern, which was characterised by the predominance of heterosexual transmission of HIV, and the consequent mother-to-infant transmission.

While the three-pattern division proved useful, it also suggested to governments of some countries in the region that they might be spared. Hence the decision of these governments to focus their efforts on HIV detection among foreigners and groups in possible contact with them. The outcome of this was that most government responses until the late 1980s were limited to HIV surveillance systems that screened specific populations. In some countries, these measures were unfortunately translated into coercive or punitive actions against HIV infected people. Until 1987, governments in the region undertook little preventive education, except in Australia and New Zealand. These early efforts reinforced the belief that AIDS was an outcome of 'Western' behaviours such as homosexuality, sexual promiscuity and injecting drug use. Governments cocooned themselves inside the misplaced belief that the social and moral traditions of their various countries would protect them from the AIDS epidemic.

By the end of 1987, however, spurred on by a Asian and Pacific health ministers' conference that focused on the need for information, education and the protection of human rights, 30 countries had developed national AIDS programmes with support from the WHO's Global Programme on AIDS. Unfortunately, these programmes were beset with economic and political obstacles, though there were some positive outcomes.

The first to respond were Australia and New Zealand, which promptly mobilised their urban gav communities and created a partnership among government, the health sector, academic institutions and community- based organisations. Early participation by, and the targeting of prevention and care activities at, people who were particularly vulnerable to HIV contributed to the relative success of these programmes. In Australia, however, groups that have a history of being stigmatised for ethnic reasons — such as aborigines — or marginalised because of unclear legal status — such as Asian sex workers — remain at high risk.

From denial to action

A WHO report states that initial denial giving way to subsequent institutional commitment characterised the response to HIV/AIDS of the governments of Thailand and India. As a result of the initial sluggish response to the pandemic, these countries experienced HIV spread through a series of epidemics consecutively affecting male sex workers, injecting drug users (IDUs), female sex workers and their clients, and, increasingly, other sexually active adults and their children. Both countries were slow to recognise the vulnerability of their populations to the pandemic, which initially led to restrictive policies that actually worked against AIDS patients and made them socially vulnerable.

This pattern has now been altered and discrimination is vastly reduced. In Thailand, a health sector plan was drafted in 1987, a three-year plan was formulated in 1988, and by 1990 the Ministry of Public Health was operating its national AIDS programme. A year later, the National Committee on AIDS was placed under the chairmanship of the prime minister. In India, attempts were made from 1987 to 1990 to formulate state and federal plans. The National AIDS Control Organisation (NACO) was established within the Ministry of Health and Family Welfare in 1992. Today, the government is striving to catch up with an epidemic that some say threatens to run out of control.

To a lesser extent, Burma has followed the same pattern. After a period of denial, it sought support from United Nations agencies for a multi-sectoral response to the pandemic and invited international NCOs to participate. Initial enthusiasm slowly fell apart because of the country's political and economic isolation, other pressing domestic priorities and weak infrastructure. While results of AIDS policies are not easy to obtain, it is believed that Burma has not yet seen results commensurate with its government's stated high priority for HIV prevention. The WHO report says that other countries in the region — including Nepal, China, Indonesia and Vietnam — have also followed a similar trend, from denial to rising commitment. High vulnerability and a widening gap between those affected by the disease and government policy characterise other Asian countries such as Cambodia, Laos and Sri Lanka. Rising HIV prevalence is seen among sex workers and their clients, homosexual men, and patients attending clinics for sexually transmitted diseases (STDs) in Bangladesh, Japan, Malaysia, Pakistan, the Philippines and South Korea. Giving cause for anxiety is the complacent attitude of the governments of various Pacific islands. It is believed that AIDS would be a rapid killer among such isolated populations.

While there are no simple answers to questions raised about the adequacy of the government of India's response, the picture is nowhere as bleak as that of Africa, where the organisation UNAIDS says more than two million people died in the last year alone. However, India (along with China and Russia) is said to be on the edge of an outbreak that, if not tackled, could prove similarly devastating.

The establishment of the NACO in 1992 marked the beginning of India's attempt to come to grips with the HIV/AIDS reality. At that time, statistics said that there were close to two million people infected with HIV in India. While these numbers have not decreased, the NACO's statistics show that the rate of infection has slowed down. To that extent, a certain degree of control seems to have been exercised. The NACO is a part of the department of health and family welfare of the government of India. It is a nodal organisation for the formulation of policy and implementation of programmes for the prevention of HIV/AIDS in India. In its mission statement, the agency says, "In a scenario with no vaccines or drug for cure in sight, information, awareness and education are the best ways to prevent the disease from spreading".

Consider the NACO statistics for India in the following graph: the annual estimates for 1998, 1999, 2000 and 2001, were, respectively, 3.5 million infections, 3.7 million infections, 3.86 million infections, and 3.97 million infections. The number of new infections can therefore be put at 0.11 million (3.97 minus 3.86) in 2001, as compared to 0.16 million (3.86 minus 3.7) in 2000. This shows that while the epidemic is still spreading in the country, there has been a gradual decrease in new infections. The NACO expects that "over a period of time, the new infections may reduce to a negligible number" — an indicator of the plateauing of the epidemic. As part of its projections, the NACO believes that "the existing indicators show that such a phenomenon may occur in the next three to four years if a strong and effective programme is implemented in all the States/Union territories". The NACO report also advises making concerted efforts to prevent the disease's spread into north India, where infection rates are still low.

Tossing up numbers

For the last 15 years, two issues have been sidetracked. While donor agencies and the Indian government speak of projections and estimates about the AIDS epidemic, there is no epidemiological data supporting these claims. Secondly, no one disputes that AIDS is related to diseases such as malaria and tuberculosis (TB), which are not only more rampant but also easier to diagnose. In the turmoil arising from the AIDS scare, all the other disease programmes are being shunted aside in preference to AIDS programmes. One result of this glut in AIDS programmes is that they are often misdirected. AIDS funds flow freely into targeted intervention programmes — meant to be geared, for example, towards condom promotion or sex education but often amounting to nothing more than glossy brochures, billboard advertising and freebies.

Consider the matter of the statistics. There are officially 3.97 million people in India infected with HIV. There were 43,542 confirmed AIDS cases in India as of 31 January 2003. There has always been a cloud over AIDS statistics the world over. This is especially so in countries with conservative traditions where everything associated with HIV/AIDS from paid sex to men having sex with men (MSM) is socially frowned upon, making reliable AIDS surveys difficult to conduct.

The NACO uses the HIV sentinel surveillance system to gather data. The system has apparently been established as the best way to monitor trends of HIV infection in specific high- and low-risk groups. A few selected sentinel sites representing various groups are screened for HIV prevalence and the trends are monitored over a period of time.

In 1994, there were 55 such sites all over India, rising to 180 by 1998. By 2000 this had risen further to 232 sites monitoring various risk groups. The population groups and sites are chosen based on information of behaviour of various risk groups for HIV infection. The high-risk population groups include patients attending STD clinics, MSM and IDUs, while low-risk populations include mothers attending antenatal clinics (ANC). The rationale of choosing sentinel sites in these clinics is that data about people with risk behaviours, such as those engaging in multi-partner sex and injecting drug use, who make use of clinic services, will be collected at regular intervals.

In 2001, the number of sites increased to 320, of which 135 were in STD clinics, 170 in ANCs, 13 among IDUs and two sites for MSM. The collected data is being used to assess multi-year trends of HIV prevalence rates among identified risk groups and to estimate India's disease burden. Those are the facts according to the NACO.

The main criticism of the sentinel surveillance method is that samples are drawn from sites that are not uniformly spread across the country. Take, for example, the states of Bihar and Maharashtra. In the 2002 survey, Bihar showed an HIV prevalence rate of 1.2 percent in its five STD sites and 0.13 percent in its seven ANC sites. Maharashtra showed a 9.2 percent prevalence rate in nine STD sites and a 1.75 percent prevalence rate in 14 ANC sites. Information in Maharashtra was also gathered from one IDU site (41.38 percent), one MSM site (23.6 percent) and one child sex worker (CSW) site (52.26 percent). The deceitful analysis: Maharashtra has a higher rate of HIV prevalence than Bihar. Such uneven trends drawn from selectively chosen groups in a few areas are being extrapolated as official statistics, with often misleading results.

Despite the absence of epidemiological data, India persists in following a 'vertical' AIDS prevention programme_ Public health care practitioners and AIDS activists say that AIDS programmes can easily be integrated into existing malaria and TB programmes. Not only are there medical reasons for doing this but also administrative justifications. The worst example of the government's blinkered approach lies in its failure to provide equal access to all people by combining the AIDS campaign with the vast existing primary health care system. Tragically, this system itself is gradually collapsing. No move is being made to revive it despite success stories in other countries, such as Thailand, which has very successfully employed AIDS programmes via the primary health care system. If a community does not have access to basic health care it is impossible for it to be responsive to messages of prevention — especially when the message speaks of a disease that has no identifiable symptoms, is contracted by socially unacceptable means, requires treatment which can be prohibitively expensive and for which there is no known cure. Donor agencies, at whose bidding the government often formulates AIDS policies, should realise that there has to be greater synthesis between India's national health policy (which is framed for a different set of priorities) and the specific needs of an AIDS policy.

AIDS aid

There has been a paucity of international development funding of late. Last year, the XIV International AIDS Conference in Barcelona identified funding constraints as the biggest hurdle in the battle against the disease. UNAIDS estimates that about USD 10 billion per year will be needed to fight AIDS globally. The resource shortfall is linked to the failure of the Group of Eight countries to honour a 1970 Organisation of Economic Cooperation and Development pledge to commit 0.7 percent of national GDP towards foreign aid.

Alarm bells about AIDS invariably jangle out two tunes — treatment of AIDS patients and awareness building and prevention of AIDS. The Indian government has chosen to give priority to AIDS prevention programmes. In January this year, India received USD 130 million from the Global Fund to Fight AIDS, Tuberculosis and Malaria, a multilateral public-private partnership currently chaired by the United States. Of the total amount, USD 100 million is earmarked for AIDS programmes and the rest for tuberculosis. This is the largest single country grant within Asia. In a press release, Richard Feachem, executive director of the fund, said, "Critical to any global effort to fight AIDS is preventing the Indian epidemic from exploding, which will otherwise occur over the course of this decade". Feachem will visit several states in India in March to support India's efforts to mobilise a broad, public-private response to AIDS, tuberculosis and malaria.

The fund also signed an agreement to sponsor an Indian tuberculosis programme proposal approved in April 2002 with USD 5.7 million in support over the first two years of a three-year project costing USD 8.6 million. This programme expands the ongoing Revised National Tuberculosis Control Program to cover 56 million people in all 47 districts of the three newly created states of Chhatisgarh, Jharkhand and Uttaranchal, and also provides some funding to an NGO in Madras, Tamil Nadu.

Meenakshi Datta Ghosh, Additional Secretary, Ministry of Health and Family Welfare, maintains, "The grant for HIV /AIDS will rapidly expand and enhance the quality of interventions for prevention of mother-tochild transmission, implement a comprehensive care package for HIV-infected mothers, their infants and partners, and increase access to anti-retroviral treatment through public-private partnerships. The grants for tuberculosis will enable rapid scaling up and expanded coverage of the DOTS [Directly Observed Treatment] initiative in geographical territories and population segments within India, not covered so far". According to Purnima Mane, chief portfolio director for the Global Fund to Fight AIDS, "Since India has the largest number of people living with HIV/ Alps outside of South highest burden of tuberculosis world- wide, these awards will significantly impact universal coverage globally". Most of the AIDS money will go towards prevention rather than treatment, as is implied by Feacham's statement.

NGOs hope that the preventive programmes will be developed on a case-by-case basis tailored to the needs of individual states and districts, rather than through a thoughtless blanket policy. States where the prevalence of recorded AIDS cases is high require an even balance between treatment and preventive measures.

A Lancet study published last year recommends that the scarce resources available to fight AIDS should go towards prevention rather than treatment. The study says that for every lifeyear purchased with treatment drugs, 28 life-years could have been purchased with prevention. Apart from the specific calculations offered by the study, it essentially says that prevention should gain precedence over treatment.

There is no doubting the urgent need for preventive programmes, but treatment cannot be shunted aside altogether. While AIDS is billed as an economic threat, the fact remains that malaria, tuberculosis, cholera, gastroenteritis and hepatitis have all been longstanding epidemics in India. They have never been seen as economic threats, let alone received the sort of funding that -is poured into AIDS. India's current allocation for the National AIDS Control Programme is USD 300 million, which has also been supplemented by a USD 190 million loan from the World Bank.

Disease dollars

For health care providers, the day-to-day realities of AIDS are completely different from the conference room compulsions of the funders. Many are suspicious, believing the situation arises from, as one activist stated, a "dollar-driven agenda with the final goal of using Indians with AIDS as guinea pigs for vaccine trials". And yet, their dependence on it is undeniable — which is probably why most choose to speak on conditions of anonymity. Pramod, a health activist who now works for a government AIDS control programme that survives on international funding, says he is dissatisfied with the outcomes of how the money is used. "All the time we are putting up street plays, printing posters, glossy brochures, handing out condoms. The condom distribution is the only directly meaningful work we seem to be doing. The rest has become a tainasha. Why are we still wasting money on this childish level of awareness? Every CSW knows what AIDS is".

An interesting fact gleaned from the NTACO's own statistics shows that while condom use is considered the cheapest and most effective preventive for the spread of AIDS, the availability of condoms is dismally low. A NACO survey showed that in most Indian states four out of five respondents stated that they had indeed either heard of or seen a condom. But did they have access to condoms? Good access to condoms, as defined by the NACO, was "access within 30 minutes travelling time from their normal place of residence (irrespective of the mode of travel). More than a third (37.4 percent) of respondents stated that it took them more than 30 minutes to procure a condom — a measure of poor access". And this despite the fact that the National AIDS Control Programme receives the highest budgeting allocation of all health programmes in India.

While the treatment versus prevention debate rages in international fora, social workers stress the need for funding to be more oriented towards care and relief of AIDS patients. "The need of the moment is relief. We have seen women thrown out of their homes just because their families suspected AIDS. People lose their jobs because of the social stigmas and fears. The government has a very unhealthy attitude toward AIDS patients. They think that these people are going to die anyway so let's concentrate on others not getting the disease. Counselling is almost zero", says one programme worker.

Those working with AIDS say they read about vast funds being given but cannot understand where the money goes. Most would like more money to be poured into public hospitals, which they believe should have hospice wards attached to them for AIDS patients. A nurse who identified herself as Shalini said she would like to see "adequate medicine for AIDS patients, sterile wards, counselling facilities for families, adequate, well-paid staff for AIDS patients, extra privileges for staff working with HIV/AIDS patients". Patients bear the cross and feel the brunt of the hard work and inadequate compensation of ward staff in public hospitals.

"Wards boys and ayahs can be especially cruel to AIDS patients. It is unfortunately very common for AIDS patients to be refused assistance. We are caught in a terrible dilemma. What we really need is a hospice ward where there is specially trained staff to deal with AIDS patients. The isolation will be good for the patients too. Right now what is happening is that everyone knows they have AIDS and so many ward staff avoid helping them. It is not only impossible to keep their illness a secret but I feel it would be wrong — ward staff have the right to know what they are dealing with".

Modern day outcastes

It will take more than awareness programmes to overcome the social stigma that persists against AIDS patients. Apart from the moralistic overtones that accompany popular beliefs of how AIDS is contracted, the other reason that contributes to social ostracism is the fear that people have of contracting the disease if they associate with AIDS patients. "Modern day leper" is how an AIDS patient at Bombay's JJ hospital sums up his predicament.

The terseness of this definition is borne out by Lakshmi and Inderpal's story. One day, Inderpal, a building janitor, brought home a woman named Lakshmi, saying that she was his wife. Rumour had it that she was a prostitute whom he had married. About eight months after their marriage, Lakshmi's physical wellbeing deteriorated noticeably. Her plumpness vanished, as did her energy levels. She said she was being medicated by a doctor but refused to give any more information. Her fear, however, was not her declining health but the fact that her husband would not let her sleep in their room any more. Indeed, soon she was made to sleep outdoors.

Once the neighbours noticed that Lakshmi was not allowed in her own house, she was barred from using the community toilet and from playing with the neighbourhood children. They also demanded answers from lnderpal about his wife's health. Using the opportunity to try and rid himself of a wife he no longer wanted, Inderpal blamed her for all his troubles and assaulted her on repeated occasions with a stick. The police would be called but Inderpal would disappear before they arrived and Lakshmi refused to press charges.

After a few months Lakshmi died. Her body was emaciated and covered with open wounds. Her husband refused to touch her body. When he was chastised for his unfeeling attitude, he disappeared, leaving others to call a municipal hearse. Later, in an effort to justify his actions and erase the memory of his callousness, Inderpal let it be known that Lakshmi had AIDS. He was immediately dismissed from his job.

As the patient from the JJ hospital says, "We are the modem day shudras.  Would you drink water from my house if you knew I had AIDS?"

This begs the question: how do you identify an AIDS patient?

Patients and profits

There was a time when doctors could only watch as their patients died of AIDS.  But in the last decade, drugs called anti-retrovirals {ARVs} became available. Initially touted as cures, they were in reality anti-HIV medication. The market now  boasts 16 ARVs,  which boost immunity to keep the patient free of sickness for a period. Even better, they can prevent mother-to-infant transmissions.

Since antiviral therapy suppresses the replication of the HIV  infection in the  body, it is seen as both a treatment and a preventive measure. Retrovir, also called Zidovudine or AZT,  is the most commonly used antiviral agent to treat AIDS.  Saquinavir, manufactured under the trade name Invirase, was  recently approved by the US Food and Drug Administration for use in the treatment of AIDS. It is the first to be approved in a new group of drugs claimed to be 10 times stronger than existing antivirals used in AIDS treatment. Other antiviral agents are in development and testing stages. Haematopoietic stimulating factors are sometimes used to treat anaemia and low white blood cell counts associated with AIDS. Preventive medications to avoid opportunistic infections such as Pneumocystis carinii pneumonia can keep AIDS patients healthier for longer periods of time.

But the downside of ARVs is their cost. ARV treatment can cost a patient USD 10,000 to 12,000 per year. Until two years ago, ARVs were considered the preserve of the rich. Bringing them to the poor meant risking an ethical argument of asking the pharmaceutical industry to bring down prices in order to save lives. The companies have always maintained that high prices were an outcome of extensive and continuing research and development. For a long while this argument stonewalled other appeals, but it became increasingly untenable as profits of pharmaceutical companies rose at the same time as deaths from HIV/AIDS. In a bid to make ARVs more accessible, in May 2000 UNAIDS began the Accelerated Access Initiative, which in theory would provide HIV patients in poor countries with cheap access to drugs. Five pharmaceutical corporations participated but only one reduced its prices. In late 2000, the Indian drug manufacturer Cipla manufactured the first ARV generic drugs in the country. The chairman declared that Cipla would offer the drugs at the "humanitarian price" of USD 500 to 800 per person. Later this was further reduced to USD one per day per person for African countries. In India, treatment costs for the Cipla ARV 'cocktail' stayed at USD 95 per month per person. Cipla chairman Yusuf Hamied said that he had offered the same price to the Indian government but never received a response.

Once again, questions of whether or not unreasonable expenditures are being channelled into AIDS are raised. While ARVs are obviously welcome for those who are acutely ill, it is worth remembering that they are paid for at the cost of cutbacks in other health areas. It is also unclear if the necessary infrastructure to provide and monitor the effect of these drugs is in place.

Final questions

While attempts at suppressing HIV rely only on medical tools like ARVs, prevention techniques involve the dissemination of accurate information. However, the symptom spectrum contributes little to the spreading of awareness. Some of the indications are frighteningly similar to those expressed by people suffering from a general sense of malaise or exhaustion. So, unless specific tests are done, there is no conclusive symptom that says that a person has contracted HIV or that an HIV infection has developed into AIDS.

The list of symptoms posted on the NACO website is exhaustive: frequent diarrhoea; prolonged, unexplained fatigue; swollen glands (lymph nodes); fever lasting more than 10 days; chills; excessive sweating, especially night sweats; mouth lesions, including yeast lesions and painful, swollen gums; sore throat; cough; shortness of breath; changes in bowel habits, including constipation; symptoms of a specific opportunistic infection (such as candida, pneumocystis, and so on); tumour (Kaposi sarcoma); skin rashes or lesions of various types; unintentional weight loss; general discomfort or uneasiness (malaise); headache. Additional symptoms that may be associated with this disease: speech impairment; muscle atrophy; memory loss; decreasing intellectual function; joint swelling; joint stiffness; joint pain; cold intolerance; bone pain or tenderness; unusual or strange behaviour; slow, sluggish, lethargic movement; anxiety, stress, and tension; groin lump; generalised itching (pruritus); genital sores; blurred vision; double vision (diplopia); light sensitivity; blind spots in vision; decreased vision or blindness; chest pain; flank pain or pain in the sides; back pain; abdominal pain; loss of appetite, indigestion, or other gastrointestinal pain; muscle pain; numbness and tingling; seizures.

To add to this vagueness, a memo advises that "initial infection may produce no symptoms. Some people with HIV infection remain without symptoms for years between the time of exposure and development of AIDS. Many other symptoms may develop in addition to those listed above".

Most people would identify with at least six of these symptoms at any given time. So does the appearance of one or more symptom indicate that a person should be tested for AIDS? Of course not. The point to be understood is that diagnosis of this disease is a very difficult task. It also requires complete cooperation on the part of the patient since clinical tests may not throw up anything for quite a while. A doctor who works with AIDS patients sums this dilemma up by saying, "I think we in the medical profession have to understand one thing, that AIDS is such a medically and socially dreaded thing that people will only accept they are infected when they have no other option but to believe this. They will suffer the worst possible privations but they will always believe that the symptoms are something else. Some groups of people like CSWs and MSM will suspect they have HIV if they see things going wrong but they often do not reveal all the symptoms or tell us their sexual lifestyle because of the social stigmas. As a doctor I probe this but I need cooperation from the patient".

HIV infection is diagnosed on the basis of blood tests using three different ELISA/Rapid simple tests involving different antigen preparations. AIDS cases are diagnosed on the basis of two different ELISA/Rapid tests on different antigens and the presence of AIDS-related opportunistic infections. The western blot test is used for confirmation of diagnosis of indeterminate ELISA tests.

But the question is when a test should be carried out. Should everyone who is homosexual, has paid for sex, sells sex, is an injecting drug user, or falls in another high-risk category, regularly have himself or herself tested? Even regular testing is no guarantee of correct diagnosis. There is a window period of up to seven to 10 years before the virus manifests itself. During this time the infected person shows no indication of harbouring a deadly virus. Ironically, while not visibly affected, he or she is a carrier and can spread the virus.

More confirming indications come at a much later stage with the development of characteristic infections and tumours, called opportunistic infections of AIDS and AIDS-defining manifestations of immune deficiency. Sometimes the presence of one of these disorders is the first sign that AIDS is present. Other sure signs are when the HIV antibody test ELISA (Enzyme Linked Immunoabsorbent Assay) and western blot are positive, absolute CD4 lymphocyte count is less than 200, p24 antigen is abnormal and the T (thymus derived) lymphocyte count is abnormal.

Questions about the accuracy of testing kits still exist, as do the doubts about the virus itself. On the one hand, the medical world protects itself by saying that the virus is constantly mutating and is therefore hard to detect. On the other, there are some situations (as in immigration visas and testing for CSWs) in which the test is made mandatory. If the virus is known to mutate is it not logical to assume that an HIV test can show a false negative result? And is the test capable of differentiating between HIV and malaria or TB or some other immune-destroying virus? Is it likely that a false positive result can be the outcome of testing on a TB patient?

And the final query: should public policy encourage HIV testing when there are doubts about the accuracy of the diagnostic materials? This question is of special relevance, since the test determines whether the individual will continue to be a part of society or instantly become outcast.

Meanwhile, a fundamental debate rages on whether the HIV virus is the sole cause of AIDS. Is enough thought being given to the possibility that AIDS could be related to lifestyle abuse rather than a virus? Merely stating that MSM, recreational drug abuse and stress disorders play a role in HIV promotion is inadequate. Pharma companies are devoting vast funds to develop an AIDS vaccine when no AIDS virus has as yet been isolated. When there are more questions than answers about the exact nature of the disease, would it not make sense for interventions to be more broad-based?

Disease definitions

Perhaps one measure of the fear and hype that surround AIDS is the vague, incomplete knowledge that most people have about it. Ask an average person the difference between AIDS and HIV and you are likely to receive answers that would make the people who are responsible for disseminating AIDS information despair.

Government programmes have succeeded in creating awareness of the disease to the extent that people know about it. The problem lies with the extent and quality of this knowledge. 'Aren't they both the same thing?', 'HIV and AIDS are different diseases but you get both via sex': such attitudes mirror the public fascination and dread of AIDS. Curiosity to know more about AIDS is fuelled largely by a voyeuristic titillation about the manner in which it is acquired and exaggerated fear about its method of transmission.

On its web site, India's National AIDS Control Organisation (NACO) demystifies the disease by simply breaking down the acronyms:

AIDS is

ACQUIRED – must do something to contract

IMMUNE – ability to fight off infectious agents

DEFICIENCY – lack of

SYNDROME – cluster of symptoms that are characteristic for a disease

HIV is

HUMAN – isolated to the human species

IMMUNO-DEFICIENCY – lacking the ability to fight off infectious agents

VIRUS – a disease-causing agent

How HIV attacks the body

A person who is diagnosed as HIV-positive has the Human Immuno-deficiency Virus, the virus that causes AIDS. Blood and body fluids carry the virus, which attacks cells in the immune system, the frontline defence against infection. The stage when the immune system is greatly weakened is referred to as AIDS. The period between the contraction of HIV and its manifestation as AIDS can be as long as seven to 10 years. Patients with HIV can stay healthy for years.

The virus

HIV is passed on through body fluids during sexual intercourse, transmission to a foetus from an infected mother, breastfeeding, infected blood and blood products, and drug injection using shared needles. Those with HIV can look and feel well for years, particularly if they take care of themselves. But the virus attacks their immune system — the body's defences against infection — and eventually leaves them prey to potentially fatal diseases such as tuberculosis. Once their immune system is severely damaged, they are said to have AIDS.

Where it hits

Once in the body, HIV mainly attacks crucial cells in the immune system, known as T-helper lymphocytes, which coordinate the body's response to infection. These cells have a protein called CD4 on their surface, to which HIV binds to gain entry.

How it acts

HIV seeks to replicate itself inside cells. HIV is a retrovirus, which means that its genetic information is not encoded as DNA (deoxyribonucleic acid), but as ribonucleic acid, or RNA. In order to gain entry to the nucleus of the cell, the virus has to turn its RNA into DNA, which it does with the help of an enzyme called reverse transcriptase.

The result

The host cell can `read' the new piece of viral DNA and admits it to the nucleus, where it starts to make many RNA molecules, which in turn make copies of the various parts of the virus. These migrate out of the cell, which soon dies, weakening the body's immune system, while the pieces of new virus join up and move on to infect more and more cells.

The latest numbers on HIV/AIDS in India

As of the end of 2001, there were 3.97 million HIVpositive

people in India and, as of January 2003,

43,542 AIDS cases. The HIV-positive figure is supposedly

only second to South Africa. However, according

to the National Intelligence Council report of September

2002, some experts believe the HIV total is 5-8

million currently and is likely to go up to 20-25 million

by 2010.

Analysing the data, Avert, an international HIV/AIDS charity, says that although India's HIV prevalence rate is low (0.7 percent), the overall number of people infected with HIV is high. The official Indian figures do not reveal such a scale of infection, but weaknesses in the sero-surveillance system, bias in targeting groups for testing, and the lack of availability of testing services in several parts of the country, suggest a significant element of underreporting. Given India's large population, a mere 0.1 percent increase in the prevalence rate would increase the number of adults living with HIV /AIDS by over half a million.

Of India's 43,542 documented AIDS cases, the state of Tamil Nadu accounts for 41.97 percent, followed by Maharashtra (including Bombay) at 24.8 percent. Together with Andhra Pradesh and Gujarat, these four Indian states represent three-quarters of all documented AIDS cases to date in India. The male to female AIDS ratio is nearly 3:1, and the majority of AIDS cases (52.8 percent) fall in the 30-44 age category, followed by 35.9 percent in the 15-29 group.

What India's statistics mean

The latest detailed results available are from a national behavioural survey conducted in 2001-2002. These data highlight important facets of the country's bid to curtail its AIDS epidemic. The survey shows behavioural change in areas where interventions have occurred and been sustained. But it also points to the difficulties in reaching some key groups (such as men who have sex with men), and large sections of the wider population (notably women living in rural areas).

An analysis of key points reveals that, countrywide, awareness of HIV/AIDS is high, with roughly three-quarters of adult Indians (aged 15-49) aware that correct and consistent condom use can prevent sexual transmission of HIV. But, in general, awareness and knowledge of HIV/AIDS remain weak in rural areas and among women. More than 80 percent of urban men recognised the protective value of consistent condom use, compared to just over 43 percent of rural women. There are marked exceptions though, such as in Andhra Pradesh and Kerala, where awareness levels among women and men are approximately the same. Yet, even in those states, women report low levels of condom use (37 percent and 22 percent, respectively) — an indication that many are not able to negotiate safer sex with male partners. The gender divide remains wide.

The survey data shows that Indians who cannot read are six times less likely to use a condom during casual sex than are those who are educated beyond secondary school, and that rural residents are half as likely as their urban peers to use a condom with casual partners. Obviously, given the varying but essentially low levels of literacy in India, this is a major hurdle. This inability to read has partly been solved by using illustrations on condom packaging — an idea that was hit upon when India's family planning crusade was at its peak. The illustrations continue to be printed. The problem lies with the availability of condoms.

Striking, too, are the high levels of awareness and knowledge about HIV/AIDS, and the evidence of high condom use among vulnerable populations in states that have mounted consistent prevention efforts. For example, Maharashtra is home to a longstanding, generalised epidemic. There, HIV/AIDS responses appear to  have resulted in higher levels of awareness and behavioural change among female sex workers, their clients and injecting drug users (66 percent, 77 percent and 52 percent of whom, respectively, said they consistently use condoms — among the highest rates in India). This may have helped prevent the state's epidemic from spinning out of control.

Similarly, Gujarat's focused programmes have helped ensure that some three-quarters of female sex workers used condoms the last time they had sex with a commercial or casual partner. But the state also realises that HIV/AIDS  responses have to reach the wider population if the epidemic is to be kept under control (Knowledge levels among women and rural inhabitants, for example, are very low: only about eight percent had no misconceptions about how HIV is transmitted.)By contrast, where interventions for general and marginalised populations have taken place together — as in Kerala — they have helped keep HIV prevalence low.

The survey shows that a significant proportion of men who have sex with men in India also have sex with women (almost 31 percent had sex with female partners in a six-month recall period), and many (36 percent during a month's recall) have sex with commercial male partners — hitherto hidden facets of the epidemic. Condom use rates, though, were low both with commercial partners (39 percent during last sexual intercourse) and with female partners (36 percent). This points to the need for urgent action, given the potential for wider and more rapid HIV spread through such multiple sexual networks.

A major challenge for India now is that of rapidly expanding the coverage of its HIV/AIDS programmes  to all vulnerable groups. Flanking that is the broader challenge of ensuring that the response reaches young, illiterate populations and rural communities, especially women.

(Based on Nationwide Behavioural Surveillance Survey of general population and high-risk groups, 2001-2002, National AIDS Control Organisation, India/ORG MARC)