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Yes, you're positive, but there's nothing we can do for you

By Sandhya Srinivasan

What can the National AIDS Control Programme achieve in the absence of integration of HIV-related services into the health system as a whole? The second in a series assessing the HIV/AIDS situation in India

When the National AIDS Control Programme was first set up in 1992 its first priority was to make people aware of HIV.

HIV is transmitted through unprotected sex, infected blood and blood products and from an HIV-positive pregnant woman to her baby either during pregnancy or through breast-milk. The programme publicised these facts.

In some ways the programme took a bold step by starting to talk about sex - the main route of transmission of HIV - in a society which didn't like to talk about such things. Public information campaigns were launched which actually spoke of how HIV infection was acquired - and how it wasn't, through casual contact, for example. These continue to meet with resistance: some feel that talking publicly about sex corrupts the young and is antithetical to Indian culture. Doubts have also been expressed about the quality of information provided: some messages seem to confuse and create fear more than they educate.

The programme also sought to provide a bare minimum of preventive services by protecting blood supply and setting up an effective treatment programme for sexually transmitted diseases (people who already have certain STDs are more vulnerable to HIV if exposed to it through sexual contact, so treating STDs would make people less likely to get infected with HIV if exposed to the virus). Finally, the programme worked at developing a system to monitor the prevalence of HIV in various parts of the country by conducting unlinked anonymous tests on STD clinic users, commercial sex workers, injecting drug users, pregnant women attending antenatal clinics, and gay men.

Phase II: More of the same

The second phase of the National AIDS Control Programme (1999 to 2004) tries to take all these activities one step further and build on them.

The primary focus of the second stage of the programme has been 'targeted intervention' to increase awareness among those believed to be at high risk of infection, and to change their behaviour. This includes the promotion of condom use among these groups.

Other activities include developing a safe blood supply through the establishment of properly-equipped blood banks where all blood is tested for HIV and other infections before use; promoting blood donation and banning trade in blood; setting up testing centres where people are encouraged to go for testing which is preceded and followed by counselling; further establishing STD treatment services, and setting up a programme to provide a short course of anti-retroviral drugs to pregnant women reporting to antenatal clinics who test positive for HIV (called the PMTCT or prevent mother-to-child transmission programme).

Phase II of the NACP also has, as stated objectives, the provision of decentralised services and strengthening of the system's long-term capacity to respond to HIV.

Finally, the number of sentinel surveillance sites, conducting HIV tests for monitoring purposes, increased dramatically in the second phase. These were in STD clinics and antenatal clinics and among groups of sex workers. As a result, it is believed, surveillance data collected in the last few years may present a more accurate picture of the prevalence of HIV infection in India. (Still, the programme continues to be plagued by queries about the quality of its data and many limitations have been noted by public health experts and activist groups.)

NACP II was implemented at the state level using state AIDS control societies, autonomous bodies headed by a senior civil servant, but with independent financial authority. These societies funded voluntary organisations to carry out prevention.

The targeted approach

Overall, the targeted approach dominates the second phase of the National AIDS Control Programme. The targeted approach is touted as a success story in states like Manipur and Tamil Nadu where HIV prevalence has reduced among target groups such as injecting drug users (in Manipur), commercial sex workers and clients of STD clinics (Tamil Nadu). Indeed, surveillance figures for 2000 and 2001 show a drop in HIV prevalence in targeted groups in a number of states. However, it is not clear if figures for the two years can be compared. Interestingly, the NACO website does not contain any HIV prevalence figures after 2001.

The programme quotes reports from successful AIDS control efforts to argue that the best way to reduce HIV transmission is to target interventions at groups most vulnerable to HIV. These vulnerable 'core transmitter' groups are preferred for interventions to groups that are more difficult to identify and approach, such as clients of sex workers.

It is true that in the US and Australia, for example, well-organised information programmes for gay men, by organisations of gay men, are believed to have brought a sharp reduction in HIV prevalence relatively soon after the appearance of HIV infection in these groups.

What about those outside the target group?

A number of activists have complained that the targeted approach misses people who are outside the target group. So, for example, messages on the risk of unsafe sex between men are presented only in situations where men congregate to have sex with other men, or to groups self-identified as having sex with other men. Since messages on the risks of gay sex are not presented to the general population, those who do not identify themselves as gay are excluded from important information.

Likewise, partners of injecting drug users risk acquiring HIV but there are few efforts to speak to them as a group.

Targeting groups for interventions also stigmatises these groups.

Surveillance figures in recent years indicate that HIV infection is not confined to the 'target groups' of people with high risk behaviour. A number of women who are HIV positive report having had sex with only one partner -- their husband. However, there is no effort to reach the 'low risk' woman and discuss how she might protect herself from infection.

Need for quality counselling

The general call for people to get themselves tested for HIV is not supported by counselling services before and after testing. The voluntary counselling and testing centres (VCTCs) set up by the programme are reportedly under-staffed and counsellors are often poorly trained. There are too many reported incidents of people being informed of their HIV status in front of other patients, of little or no effort being made to educate those who test negative of how to avoid risk behaviour.

Yes, you're positive, but there's nothing we can do for you

It must seem particularly unjust to those who are encouraged to test themselves and find themselves HIV positive, that they have nowhere to go.

A few voluntary organisations do provide treatment and support but they can meet just a fraction of the demand for such care. In general, both private and public health services are completely unprepared to respond to the growing need to care for people with HIV. Private services generally refuse treatment, or provide it at exorbitant costs to those who can afford it. Very few public health services are equipped to provide treatment of any kind. Drugs are in short supply, as are protective materials to be used for all patients (following universal precautions). And few personnel have been trained in standard procedures to prevent transmission of HIV or other infections. The kind of resource allocation, education and regulation needed to ensure treatment to people with HIV-related health problems do not exist.

In such a situation, there is no scope for treatment with anti-retrovirals through the public health system, a demand made by some groups working with people with HIV.

A weakened health system

There is much talk about integration of HIV prevention and treatment into the system. However, not only are preventive programmes patchy and integration poor, there is no integration of HIV-related services into the health system as a whole.

Further, public health services in India have deteriorated steadily over the last few decades. There is no evidence of efforts being made to strengthen the health system and prepare it for a growing burden of ill people. Barely 20% of all health-related expenditure is made by the government; the rest is within the private sector, where payment is made by individuals spending their own money since health insurance is available to a negligible percentage of people in India. The increase in HIV-related problems calls for increased government spending on health. As more awareness is generated and more people test positive, this demand is bound to grow.

This increase in government spending on health is a decades-old demand. Instead, the amount spent on health has gone down, not up. There are innumerable instances illustrating the collapse of health care through the government, from the rural primary health centre all the way up to the municipal hospital representing the tertiary level of care. Equipment does not work, drugs and other materials are not available, staff are absent, and so on.

In fact this general deterioration of public health services actually increases people's vulnerability to HIV as shortages encourage the reuse of unsterilised equipment.

Further, the absence of treatment may in fact exacerbate the stigma attached to HIV.

HIV is driven by inequities

HIV is intrinsically linked to poverty and to inequalities of all kinds - social, economic and gender. However, awareness and other preventive programmes do not address inequities that are intrinsic to the problem. The married woman is unable to refuse her husband unprotected sex. The commercial sex worker will not insist on her client using a condom if he threatens to go elsewhere. The national HIV programme fails to take into inequities into account.

InfoChange News & Features, July 2003