Unsung Heroine: Kousalya, Positive Women’s Network, India
The ACW campaign highlights unsung heroes/heroine’s working on the frontlines of HIV and AIDS. The following piece was written by P.Kousalya, President of Positive Women Network, Chennai, India. September 21, 2006
I am Kousalya from a village in Namakkal district in Tamilnadu, located in the southern part of India. Presently, I am settled in Chennai and I am working on women and children issues through the national network of women living with HIV, Positive women Network (PWN).
I was diagnosed HIV- positive in 1995, and since then, my work has been towards reaching other women and making information accessible on treatment and care, especially rural women, a group whose access to information is limited. Right from the start, PWN emphasis was placed on care and treatment issues, but the government priority was on prevention programmes and it was quite a struggle for us as an organization to resolve this situation.
In 1999, I came down with complications of cryptococcus, tuberculosis, and pneumonia all at the same time and my CD4 count had come down to 24. I was taking treatment in a private hospital and was given antiretroviral treatment (ARV’s). While getting treatment, I was not provided with any information about the treatment and the side effects of the drugs that I was taking. I gained information about the drugs and their side effects by reading the instructions on the drug bottle. Then, I realized how important it was to be educated so that people could learn about their treatment and care, especially if no appropriate counseling is provided through medical facilities. However, this is often not possible for lots of people in India who are unable to read or write. I was also sponsored with a drug that was expensive and was only affordable to me because of a private donor. I was fortunate to support myself because I was educated and could learn about treatment and care and had a private donor that made drugs affordable to me.
But, I asked myself the questions: what about women who do not have anybody to help or cannot read. Another question that troubled me was: how many [women] can have this privilege of having a private donor or “sponsor”?
In 2002-2003, I had an emotional breakdown because of death of my close friends in the network movement and people whom I had met during my visits to the hospitals. Besides being in grief for my friends, I was also enraged at the Indian government. As women were dying and children were becoming orphans, the government was still focusing on HIV prevention and giving less attention to care and treatment for people living with HIV.
PWN made concerted efforts with the state and national government and even raised issues at the international events, including the international conference at Barcelona in 2002 when the health minister from India was also present. At the conference, the health minister made a promise that ARV treatment would be made available free of cost to people living with HIV. Since 2004, the government has been providing ARV to people living with HIV with prioritization for women and children.
I was also awarded with a fellowship programme to conduct study to advocate issues of women living with HIV through health innovation fellowship programme of the Population Council. This programme enabled me to study the problems of women in relation to treatment and care and also provided with information that I use at many committee meetings that I represent.
I personally feel that through hard efforts we have achieved what was talked about as impossible: “free ARV treatment for all” .So we people living with HIV should not cease in voicing our concerns and with support and partnerships, we can achieve quality care and support for people living with HIV including the often least reached women living with HIV and children.
Our efforts will not ease, as the government is also taking up a lead in enabling women with the treatment and care, our efforts now have moved towards advocating for better reach and quality services, especially for pediatric formulations of ARV’s, second line ARV regimens in the government programme.
I am Kousalya from a village in Namakkal district in Tamilnadu, located in the southern part of India. Presently, I am settled in Chennai and I am working on women and children issues through the national network of women living with HIV, Positive women Network (PWN).
I was diagnosed HIV- positive in 1995, and since then, my work has been towards reaching other women and making information accessible on treatment and care, especially rural women, a group whose access to information is limited. Right from the start, PWN emphasis was placed on care and treatment issues, but the government priority was on prevention programmes and it was quite a struggle for us as an organization to resolve this situation.
In 1999, I came down with complications of cryptococcus, tuberculosis, and pneumonia all at the same time and my CD4 count had come down to 24. I was taking treatment in a private hospital and was given antiretroviral treatment (ARV’s). While getting treatment, I was not provided with any information about the treatment and the side effects of the drugs that I was taking. I gained information about the drugs and their side effects by reading the instructions on the drug bottle. Then, I realized how important it was to be educated so that people could learn about their treatment and care, especially if no appropriate counseling is provided through medical facilities. However, this is often not possible for lots of people in India who are unable to read or write. I was also sponsored with a drug that was expensive and was only affordable to me because of a private donor. I was fortunate to support myself because I was educated and could learn about treatment and care and had a private donor that made drugs affordable to me.
But, I asked myself the questions: what about women who do not have anybody to help or cannot read. Another question that troubled me was: how many [women] can have this privilege of having a private donor or “sponsor”?
In 2002-2003, I had an emotional breakdown because of death of my close friends in the network movement and people whom I had met during my visits to the hospitals. Besides being in grief for my friends, I was also enraged at the Indian government. As women were dying and children were becoming orphans, the government was still focusing on HIV prevention and giving less attention to care and treatment for people living with HIV.
PWN made concerted efforts with the state and national government and even raised issues at the international events, including the international conference at Barcelona in 2002 when the health minister from India was also present. At the conference, the health minister made a promise that ARV treatment would be made available free of cost to people living with HIV. Since 2004, the government has been providing ARV to people living with HIV with prioritization for women and children.
I was also awarded with a fellowship programme to conduct study to advocate issues of women living with HIV through health innovation fellowship programme of the Population Council. This programme enabled me to study the problems of women in relation to treatment and care and also provided with information that I use at many committee meetings that I represent.
I personally feel that through hard efforts we have achieved what was talked about as impossible: “free ARV treatment for all” .So we people living with HIV should not cease in voicing our concerns and with support and partnerships, we can achieve quality care and support for people living with HIV including the often least reached women living with HIV and children.
Our efforts will not ease, as the government is also taking up a lead in enabling women with the treatment and care, our efforts now have moved towards advocating for better reach and quality services, especially for pediatric formulations of ARV’s, second line ARV regimens in the government programme.
posted by AIDS-Care-Watch at 1:34 pm
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