The first case of HIV infection was documented in 1986, among sex workers in Chennai, Tamil Nadu1. This first case report and the subsequent reports, including those from northeastern India describing HIV infection among injecting drug users, were received with much skepticism and denial by academicians, politicians, sociologists and the general public.
With a population of one billion, the HIV epidemic in India will have a major impact on the overall spread of HIV in Asia and the Pacific. Within India the spread of HIV within the country is as diverse as the societal patterns between the different regions, states and metropolitan areas. The epidemic varies from states with mainly heterosexual transmission of HIV, to some states where injecting drug use is the main route of HIV transmission.
To mitigate the spread of the epidemic, the Indian government established the National AIDS Control Organization (NACO) in the year 1992. The role of NACO is to plan and implement HIV prevention programmes in order to manage and control HIV/AIDS cases in India.
Reports from NACO sentinel surveillance presents a grim picture of the present scenario, with approximately 73.10% of the probable source of infection mainly through heterosexual transmission2. India has an estimated 3.9 million HIV-infected individuals and there has been a steady increase in the number of cases being reported from all over India, especially in the southern and northeastern states.
Based on sentinel surveillance data, the HIV prevalence in the adult population in India has been classified as follows:
Group I: High prevalence states such as Maharasthra, Tamil Nadu, Karnataka, Andhra Pradesh, Manipur and Nagaland, where HIV infection has crossed 1% or more in antenatal women.
Group II: Moderate prevalence states such as Gujarat, Goa and Pondicherry, where HIV infection has crossed 5% or more among high-risk groups, but the infection is below 1% in antenatal women.
Group III: Low prevalence states such as Kerala from the south and other north Indian states that have reported less than 5% of infected cases among the high-risk groups.
As of September 2002, NACO has officially reported 40 708 AIDS cases in India3. The prevalence of HIV among urban sex workers is approximately 40–70%, among attendees in urban STD clinics it is approximately 15–30%, and approximately 1–3% among women attending antenatal clinics. HIV infection has also gradually been spreading to rural areas; and a prevalence of 2.2% has been reported in Tamil Nadu (APAC)4.
The expanding global HIV epidemic has disproportionately affected developing nations, where it is largely a consequence of heterosexually-transmitted infections. Women are biologically and socially at greater risk for acquiring HIV. So it is not surprising that HIV is spreading at a faster rate among women than among men. There is growing evidence of an alarming increase in HIV infection among monogamous housewives, for whom sexual contact with spouses appears to be the only risk factor in the vast majority of cases5. At our centre, 88% of the women who are living with HIV and have ever been married reported history of only one lifetime sexual partner6. The continued spread of the virus among married women of reproductive age presages a dramatic increase in HIV-infected pregnant women during future years. Ultimately, the best way to prevent perinatal HIV infection would be to decrease the transmission of HIV infection to women.
Social Precursors of HIV Infection
In ancient times, Indian culture offered the world the renowned treatise on sexuality The Kamasutra. Sexual imagery found a pride of place in temple sculptures. Elaborate rituals covered marriage, nuptial nights, pregnancy, and childbirth, recognizing sex and reproduction as part of the social processes that surrounded them. Such openness about sex and sexuality is now nearly absent. Talking about sex is taboo, and efforts by policy makers to introduce sex education in schools are half-hearted7.
There are many social precursors for the rapid spread of HIV in the country, including the inability to talk openly, and learn about sex and sexuality, pressures from family to give birth to an heir, and an implicit threat to the marriage when a woman is unable to become a mother, the high prevalence and acceptability of domestic violence against women, the moral double standard imposed on men and women, and the lower status of women in general. The pressure to be a mother is so intense that when a woman has to choose between being HIV seronegative but without children and possible conception with possible HIV infection, she often chooses the latter8–10.
The seroprevalence of HIV among antenatal cases in India varies considerably with location, and has been reported to be between 0.5 and 7%. HIV sentinel surveillance data show that in 10 Indian states, pregnant women have more than a 1% HIV seropositivity rate. The rate in Maharashtra is approximately 3%. An area in the south of Tamil Nadu called Namakkal, reported rates as high as 7%. Pondicherry has reported 4% seropositivity among antenatal cases.
There are 27 million live births every year in India. With an average prevalence of 2% HIV among antenatal cases, approximately 540,000 of them could be HIV positive. If we were to consider a mother-to-child transmission rate of 42% as reported in some African studies, India would be burdened with some 201,600 HIV-infected children every year. To manage such numbers effectively in India, we need to focus on many issues including direct and indirect costs. The cost of treating/managing an HIV-infected child is still not known, as there are no standard guidelines prescribed in India. Antenatal care facilities need to include processes of effective HIV counselling and confidential testing to establish the HIV status of pregnant women, and to provide an intervention to those women who are identified as being infected. However, access to prenatal care varies considerably, and it has been estimated that 32% of women globally receive no prenatal care11,12. Access to any kind of healthcare remains a problem for most women in India. Women also ignore their own health many times due to competing priorities in their lives.
‘I would rather be HIV-infected than a barren woman’ said Aruna, one of our HIV-negative women whose husband has HIV. She continued saying ‘if my neighbour sees me as she goes out to work, it is considered so inauspicious that she will go back home to cleanse herself under the shower’. Barren women are not welcome at weddings. They are not invited to functions called the ‘Valaikappu (bangle) ceremony’, where women, in their seventh month of pregnancy, are decorated with flowers and bangles on both arms and then sent to their mother's home for the delivery.
This very clearly shows the fertility pressure on women, no matter the HIV status of their husbands.
There is a cohort of 1987 women who are followed up at YRG CARE, of which 386 are HIV negative but their husbands are HIV positive. There is pressure on these women to bear a child by their in-laws, to the extent that they are threatened that their husbands will be married a second time so he can have a child by his second wife. The in-laws fail to understand that their son is having safe sex to prevent the transmission of HIV to his wife. Neither the son nor the daughter-in-law is able to discuss these issues with their parents because of the stigma attached to the HIV disease.
Discordant couples access the counselling services at YRG CARE, where they are given various options to have a child.
Adoption: ‘Lucky Stars’
Seenu, a 4-year-old bright and big-eyed child used to sleep on the pavement. His mother was infected with HIV and committed suicide as she was unable to bear the stigma. His father hit the bottle to drown his sorrows. His father sold him, his only child, for a mere Rs. 5000 to a serodiscordant couple.
The couple love Seenu a lot. The man is a flourishing businessman and his wife tested positive as a result of receiving one unit of blood during a transfusion. They were unable to have their own child because she did not want to infect her husband. Seenu receives a good education and has a loving family to take care of him. Both Seenu and his new parents are happy today.
Artificial Insemination with Donor Semen: ‘Baby at Any Cost’
As is customary in southern India, Revathi married her uncle, her mother's own brother. Despite being aware that he had tested positive for HIV infection she agreed as it was the social custom. The couple agreed to adopt safe sex measures. A couple of years later, the family placed pressures on her to have a child. The couple was in a dilemma. Revathi and her husband had to travel 400 miles to reach Chennai. They reached out to YRG CARE for help. On discussion with the counseling team, they opted for artificial insemination to deal with the pressures. They decided not to inform their family about their decision, keeping the matter confidential just between the two of them and the counselor. The couple was delighted when Revathy conceived. Their families were ecstatic at the news. Today Revathi and her husband are the proud parents of a little girl – Aarthi!
Antiretroviral Therapy to Reduce HIV Transmission to the Spouse: ‘Where There's a Will There's a Way!’
A businessman by profession, Ameen had known about his HIV-positive status since 1992, and had been regularly returning for his clinical check-up at YRG CARE. His family was unaware of his HIV infection, and he did not want to discuss it with them. Over the years, his family wanted him to marry and settle down. In 1997, he finally gave into family pressures and planned to use condoms to prevent infecting his wife. Soon after their marriage, Ameen's wife wanted to have a child. He came to YRG CARE with this research question ‘When antiretroviral drugs can prevent vertical transmission (mother-to-child transmission) then why not try it to prevent infection from me to my wife?’ Despite giving Ameen all other options, he refused to acknowledge that it was unethical. The counseling team was in dilemma. He stated that they could help him by prescribing antiretroviral drugs, as the only other alternative would be giving in to his wife's need to have a child, and have sex without appropriate precautions. Today, Ameen is the proud father of a son. His wife and son are HIV negative!
Artificial Insemination with Husband's Washed Sperm
The washing of sperm is a concept that has elicited much interest and discussion, and couples have approached YRG CARE looking for hope. As yet, there is no centre that has carried out this technique in India. The reliability of such a technique is as important as its cost.
The threat of HIV infection would and should be an adequate deterrent to unsafe sex. However, we find that the social and cultural pressures lead women in India to undertake needless, preventable risks; such risks are founded on male dominance and fertility pressures. Family counseling and preparing the community to shed some of its past practices and beliefs may be the two most easily described but poorly implemented strategies. The burden of HIV infection falls disproportionately on women, with an added threat of the infection looming at large.
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