Kwangu Liwewe talks to a courageous advocate for HIV positive women in India
It was International Women’s Day on 8 March, and UN Secretary General Kofi Annan marked the occasion with a speech in which he said that girls and young women now account for nearly two-thirds of people worldwide under 24 who are living with HIV. Shockingly, recent surveys have revealed that in many countries the biggest HIV risk for women is to get married, because that’s when they are expected to stop using condoms, and become infected by HIV positive husbands.
 Photos: Nikki Kastner |
One of the first women living with HIV in India to reveal her status to the public and media is Periasamy Kousalya.
Born in April 1974 in semi-urban Namakkal near the southern city of Chennai, also known as Madras (where incidentally the first case of HIV infection in India was detected), Kousalya, as she prefers to be known, is the youngest in her family, with an older brother and sister.
She was married at the age of 21 in 1995 and within a few months was diagnosed HIV positive. Her husband knew about his status before their marriage but did not tell her. He quickly fell ill after they were married and died only seven months later.
“ Forced marriage, forced sex and subsequent infection with HIV from a husband are typical of many cases in India”, Kousalya says.
“ I was devastated at my diagnosis. At that time there was very little information on HIV and Aids and I just didn’t know where to turn to. For months I didn’t speak to anyone about it and felt like I was in total darkness.”
Poverty, a rigid class system and conservative Hindu values are said to contribute to the high prevalence of HIV in India.
Latest estimates indicate that India has the second highest number of people living with HIV after South Africa. The population currently stands at about 1.2 billion people with 28 per cent of them living in the urban areas. It is estimated that at least 4.58 million are infected with the virus.
The country has chronic shortages of water, dangerous levels of pollution and bad urban sanitary conditions. Its deteriorating health system can no longer sustain the ever-increasing number of new infections.
At the time of her diagnosis Kousalya began to take medication, not knowing they were uncertified drugs sold on the black market at exorbitant prices. She paid a high price: her health deteriorated. She suffered bouts of meningitis and tuberculosis.
Luckily enough she survived and today heads the Positive Women Network (PWN), a self-help initiative of women living with HIV and Aids in India.
The Network provides counselling, monthly support group meetings and training programmes. It networks with the Indian government, non-governmental organisations, care centres and international bodies.
“ PWN is fighting for a better life for the women and children living with HIV in India. A life not secluded; a life free from stigma with all our rights intact.
“ Just a normal life like everybody else.”
HIV/Aids in India is perceived as a morality issue. The HIV prevention initiatives
launched so far have unfortunately had the effect that most of the population
now associates the disease with sex workers and with the lorry drivers who
travel between towns.
“ Few sex workers are involved in PWN’s activities because they are discouraged by the public’s attitude to their trade. This discourages them from getting involved in advocating for other women with HIV like themselves.
“
I blame some NGOs that are giving the wrong information. It is alarming that
the ordinary man in the street believes that HIV is only contracted by immoral
acts. It still isn’t evident to the people and that’s why India
is now feared to be at the epidemic stage of the disease.
“
What we need is more access to information about HIV and Aids. The government
has got to stop focusing only on prevention work but look at care and support
as well. All these are vital in the fight against HIV.”
India is one of the few countries, according to UNAIDS, that initiated HIV prevention activities in the very early stages of the epidemic, and its government is committed to prevention efforts. But Kousalya feels there is a need for a more concerted effort to be put into care and support.
“ The British government and USAID have been pumping in money for awareness campaigns. There is so much concentration on abstinence, behaviour change and condoms. We need to take it a step further and include care and support. Without these two, prevention won’t work.”
Kousalya says that providing free antiretroviral medication has been a daunting task for the government.
“
Even though local companies like Cipla are manufacturing generic medication,
the irony is that the export price is cheaper than the local price, so the
masses cannot afford it”.
Last month three Indian pharmaceutical firms (Cipla, Ranbaxy and Matrix Laboratories)
were named to supply HIV medication to the Clinton Foundation for use in
African and Caribbean countries at £132 per patient a year.
India is also having a hard time reconciling its traditional cultural attitudes about women and sexuality.
“ Women are not getting enough information about sex and sexuality issues. In the family set-up it isn’t been discussed because it is taboo. Before we are married off there is absolutely no sex education and so there’s a high level of ignorance surrounding these issues.”
Inequalities between men and women in countries like India fuel the HIV/Aids
situation. Gender violence, lack of property rights for women and unequal
access to treatment and appropriate prevention information mean that women
are at
a greater risk of getting HIV.
“An unequal right to property, for instance, means that women are forced
out of their homes when widowed or diagnosed with HIV. In order to make a living
they then have to undertake sex work. This increases their vulnerability to
other illnesses.”
Women (and men) working as sex workers are particularly vulnerable to HIV transmission due to violence and rape. Sex work in India takes place in brothels; male sex workers operate on the streets. Dalit women (from the lowest caste) are among the most vulnerable to being forced into sex work as a result of the extreme disadvantages they face.
Widows in India are disadvantaged, as culturally they tend to be regarded as having a very low status in the household. Women widowed by Aids are doubly marginalised as a result of the stigma. They may be thrown out of their homes, or sent back to their parents’ home without their dowry or jewellery.
Kousalya says PWN is working at increasing the involvement of men. “We want them involved in activities and interventions that will help reduce gender inequalities and minimise the impact of HIV.
“ I long for the day when positive women in India will be able to express their opinions and feelings, and make a meaningful contribution to the fight against HIV and Aids.”
