To live with dignity

The combined effect of gender, economic and social inequalities has made women the group that is most vulnerable to HIV/AIDS. There is an urgent need to provide guaranteed access to standard health care in the public health system and protection through legal policy guidelines.

UNABLE to bear the taunts of her colleagues, 34-year-old Sunita Patel, the Acquired Immune Deficiency Syndrome (AIDS)-infected widow of a soldier in Gujarat, committed suicide.

In a remote village in Andhra Pradesh, Sukanya was stoned to death by her neighbours after her husband died of AIDS and she was suspected to be human immunodeficiency virus (HIV) positive.

Sunita Patel and Sukanya are victims of myths, half-truths and the general lack of awareness that surround HIV/AIDS. Perhaps that is why the epidemic has assumed pandemic proportions in India, affecting 5.1 million people, second in this respect only to South Africa (5.3 million). India accounts for over 10 per cent of the people living with HIV/AIDS (PLWHA) globally and over 60 per cent of the 7.4 million PLWHA in the Asia-Pacific region. In India, over 35 per cent of the HIV/AIDS cases reported has been in the most productive age group of 15 to 24 years, and women account for over 60 per cent of them.

As the world marked the 16th World AIDS Day on December 1, those infected with the scourge continue to battle the stigma, superstitions and malinformation, which hurt them far more than the physical effects of the disease. For every person living with HIV/AIDS, a family and a community are affected.

AIDS was classified as a disease in 1981 and HIV identified as its cause in 1984. Today, the scourge has claimed more than 3.1 million lives all over the world. However, even two decades after HIV was first detected, India is still to come to grips with the problem.

After being in denial mode for long after the scourge was first detected among sex workers in Chennai, the Central government launched a prevention programme, targeting the most vulnerable groups such as women sex workers, truck drivers and needle sharers among drug users in the high-incidence States of Manipur, Maharashtra and Tamil Nadu. But without adequate education and awareness generation about HIV/AIDS, prevention efforts were not effective in stopping the spread of the scourge. In the meantime, the scourge entered the general population via heterosexual men and those who visited sex workers.

Without any control over their own sexuality and with inadequate access to reproductive health care, women are four to five times more at risk of contracting HIV than men. Monogamous women and their infants are now getting infected. The need to focus on women has been realised. This year's theme for the World AIDS Day was "Women, Girls, HIV and AIDS".

The latest United Nations report puts it grimly: "The face of HIV/AIDS is primarily young, and all too often female." Nearly half of all HIV-positive adults are women - up from 35 per cent in 1985. Almost 12 million people in the 15-24 age group and three million children live with HIV/AIDS worldwide. As many as 6,000 young people and 2,000 children get infected every day and 60 per cent of them are female. The risk of HIV infection is five to six times higher in adolescent girls than boys. Women are four times more at risk of contracting the disease from their partners than men; more than 90 per cent of pregnant women who tested positive for HIV in the antenatal clinics had single sex partners.

Despite the government investing crores of rupees in prevention programmes, the epidemic is spreading. The infection has spread rapidly from within and between particular groups to the general population. It has spread from the urban to the rural areas, from the high-risk groups to the general population, and from the mother to the child.

The profound gender, economic, social and cultural inequalities together make women the most vulnerable group. Many HIV interventions are predicated on the premise that people are free to make empowered choices once they understand the implications of their actions. In reality, women and girls face a range of HIV-related risk factors and vulnerabilities that men and boys do not; many of these are embedded in the social relations and the economic realities of their societies.

Inability to negotiate sex, transactional sex and lack of access to resources are some of the reasons for women's increased vulnerability to HIV. Violence against women also significantly increases their vulnerability to HIV and sexually transmitted infections (sexually transmitted infections raise the risk of HIV infection by over 10 times). Besides being directly coerced into unprotected or unwanted sex, women are also prevented from even accessing HIV-related information, getting tested and seeking treatment when they suspect infection.

Thus, women are often unaware of the risks of HIV infection or of the ways to protect themselves from it. They rarely have access to prevention services and methods. And women who have limited economic security or are involved in coercive or abusive relationships often cannot negotiate abstinence or use of a condom. Young women are especially vulnerable to HIV for biological, economic and social reasons.

Thus, according to Noeleen Heyzer, Executive Director, United Nations Development Fund for Women (UNIFEM), gender inequality has turned a devastating disease into an economic and social crisis, which requires the infusion of resources into programmes and policy responses that promote women's empowerment. Such efforts, according to Heyzer, include increased access to economic opportunities and education and safeguarding of women's legal rights and equal access to health care. According to the Joint United Nations Programme on HIV/AIDS (UNAIDS), men and women living with the disease show no difference in survival rates when they are treated equally.

But the prevailing gender attitudes mean that the treatment needs of men often take precedence. Families are also hesitant to send women to clinics for fear of disrupting the "care economy" that these women provide through their household duties, which often include tending to other family members with HIV/AIDS.

Many observers also argue that the oft-touted ABC (Abstain, Be Faithful, and use Condoms) approach to preventing HIV infection is of limited utility for women and girls. This is clear from the fact that 90 per cent of the pregnant women who tested positive for HIV had only a single sex partner. According to Thoraya Obaid, Executive Director, United Nations Population Fund (UNFPA), abstinence is meaningless to women who are coerced into sex. "Faithfulness offers little protection to wives whose husbands have several partners or were infected before marriage. And condoms require the cooperation of men... . The epidemic won't be reversed until governments provide the resources needed to ensure women's right to sexual and reproductive health," she says.

While research on several microbicides that can be used by women to prevent contracting the infection and does not require the consent or the knowledge of her male partner is on, not one product is as yet close to reaching the market. A vaccine is also some years away. Until then, the condom, which is 90 per cent efficient in controlling the infection, is the only means to prevent the spread of HIV.

Inhibiting the replication of HIV and delaying the deterioration of the immune system, anti-retroviral (ARV) drugs, developed in 1987, reduce morbidity and extends life. But initially, as ARVs were mainly produced by multinationals that have a 20-year patent on them, its price was beyond the reach of those needing them, particularly in the developing countries. Terming the lack of access to ARV drugs in developing countries, particularly in Africa, which needs them the most, a "global emergency", the World Health Organisation has allowed countries to produce their generic versions. Several national pharmaceutical companies manufactured the generic drug and prices plummeted from Rs.30,000 a month to Rs.1,000. Still, most people are unable to have access to them.

A RECENT initiative called `Three-by-Five', by the WHO and UNAIDS, plans to increase the access to a first-line regimen of fixed-dose combinations of three ARV drugs to three million HIV/AIDS patients in developing countries by 2005. Launched in September 2003, the National AIDS Control Organisation (NACO) has decided to provide free ARV treatment to 100,000 HIV patients in India. Since April 2004, ARV drugs are provided free in eight centres in six high-prevalence States, and within them to three vulnerable groups: HIV-positive mothers; HIV-positive children below 15; and AIDS patients who seek treatment in government hospitals.

According to Dr. P. Krishnamurthy, the Project Director of the Chennai-based AIDS Prevention and Control Society (APAC), strict adherence to the ARV treatment regimen and nutritional supplements are crucial for effective treatment. In a society where women are discriminated against, access to treatment options itself is limited. And, even if they have access, good nutritional food is a far cry, making it ineffective.

The scourge, having reached monogamous women, is now affecting their children. Mother-to-child, or vertical, transmission causes more than 90 per cent of all HIV infections in children under 15. According to Elizabeth Lule, the World Bank's Adviser for Population and Reproductive Health, HIV-positive pregnant women are most likely to transmit the disease to their children during pregnancy, delivery and breastfeeding. The risk of a mother transmitting HIV to her infant is put at 5-10 per cent during pregnancy, 10-20 per cent during labour and delivery, and 5-20 per cent through breastfeeding. "Even the phrase `mother-to-child' is loaded against women, as all responsibility of the transmission is put on the mother and none on the father," she says.

One of the most successful uses of ARV medications has been in the prevention of vertical transmission. Studies show that brief courses of ARV treatment given to mother and infant can dramatically reduce the risk of vertical transmission with little or no significant long-term effects on the infant.

A recent study conducted in Rwanda and Uganda shows that HIV-positive mothers may breastfeed without infecting their infants. Over 350 HIV-infected mothers were given ARV drugs from the 36th week of pregnancy until a week after delivery. The babies were exclusively breastfed, and they received daily doses of an ARV drug until one month after they were weaned, usually five to six months later. When tested at six months, only three of the infants were infected, compared to the 50 that would have been infected had they not received the ARV drug.

Access to HIV/AIDS treatment has become the subject of a major debate in India, fuelled by a public interest petition filed in the Supreme Court last August demanding treatment for HIV/AIDS patients and the provision of infrastructure.

Shruti Pandey, a lawyer working for the human rights group that filed the petition, said: "Our principal prayer was that the government should provide ARVs within the public health system and create an infrastructure, as sticking to the regimen is important." But the government's position, she said, was ambiguous: "It has not spelt out measures on how it plans to maintain confidentiality and manage toxicity (of drugs) and neither is it clear on how it plans to raise the resources."

The United Progressive Alliance government at the Centre has included AIDS control in its Common Minimum Programme by calling the disease "a priority" and promising that funds would be allocated for it. Of the total outlay of Rs.2,208 crores (Rs.22.08 billion) for the Health Department in 2004-05, Rs.47.6 million has been allocated for HIV/AIDS. The World Bank released Rs.814 million and the United States Agency for International Development Rs.118 million for AIDS projects in 2005.

Various international agencies are financing projects to battle the spread of HIV in India, but the authorities say the funding falls far short of the requirement. A report by the Comptroller and Auditor-General of India draws attention to the fact that Thailand had been spending $1 per capita on HIV/AIDS. "India," it said, "needed to strive to spend at least 50 cents, which would amount to $500 million." According to Shruti Pandey, 95 per cent of the people infected with HIV are poor and most of them do not even know about the first-line regimen.

According to Dr. Amit Sen Gupta of the Delhi Science Forum, focussing on targets that reduce people to numbers and health care a convenient jargon is not going to do anyone any good. Health programmes need to be integrated with the primary health care system, with decentralised planning and decision-making. The programmes need to be implemented with the active participation of the community. "The top-down approach has to go," he said.

Says Shruti Pandey: "Where are the attempts to build an atmosphere that is helpful to AIDS patients? Every day, we hear of some instance of discrimination against HIV-positive people. They are being denied their right to employment and the orphaned children are not given any support. These are urgent questions in India, which, along with China, is expected to emerge as the biggest Asian AIDS hotspot in the coming years."

There are few pieces of legislation in the South Asian region that refer specifically to HIV/AIDS. Even public health laws have not been amended to include HIV. As a result, most laws predate HIV and affect the rights of PLWHA.

The Constitution recognises a range of fundamental rights. The Supreme Court has interpreted these constitutional guarantees and derived from them the rights to privacy, health and medical assistance, life with dignity, and information, all of which are significant in the context of the HIV epidemic. However, the experience of invoking these rights for HIV-positive persons has been disquieting.

There is also no guarantee of access to standard health care in the public health system, and of privacy or confidentiality. In India - unlike in Bangladesh and Nepal - the right to privacy is not explicitly guaranteed by the Constitution but has been judicially derived. It has, however, not been adequately tested in the context of HIV/AIDS. The right to privacy (and confidentiality) is also closely linked to the contentious issue of compulsory HIV testing.

Again, with respect to discrimination in employment, the precise circumstances in which this will be unlawful have not been made clear. Public health concerns are cited to justify discrimination against PLWHA at the workplace. Similarly, though India has ratified the Committee on the Elimination of all forms of Discrimination Against Women (CEDAW), there are still many legislative provisions that are biased against women. For example, the CEDAW guidelines on HIV/AIDS - avoid stigmatising women and female sex workers, support women's efforts to get their partners to use condoms, empower women to make their own sexual choices - have gone largely unheeded.

Despite the controversies on the exact number of people infected and the exaggerated claims of vested interests, there is no denying that the numbers are increasing and the disease is shattering families. Discussions on strategies to deal with HIV/AIDS and the care for the infected must spread beyond seminar halls. There must be action on the ground - to propagate information on HIV/AIDS; to create awareness and educate people to erase the stigma attached to the disease; to enable the community to care; to put in place and respect the rights of those infected; and to help the infected live with dignity. Without losing more time, the best practices across the world, such as the universalisation of condom use in Thailand's sex industry and the targeted interventions of APAC in Tamil Nadu, need to be studied and replicated wherever possible.

There is surely an urgent need to develop legal policy guidelines through a process of consultation and create supportive community-based systems to educate people and care for those infected so that millions like Sunita Patel and Sukanya can begin to live with dignity.