Positive Power,

TIMES NEWS NETWORK. THURSDAY, JULY 31, 2003 12:38:54 AM

When she tested positive for the HIV virus in 1995, P Kausalya was an
ordinary housewife. In the eight years since, her courage,
oranisational skills and determination to break the silence on
HIV/AIDS has made her an icon for those living with the dreaded virus.

In the Capital recently to attend a meeting of the parliamentary
forum on HIV/AIDS, the president of the Positive Women's Network in
Chennai spoke to Lalita Panicker:

How did you contract HIV, and how did you and your family deal with
the knowledge?

My husband was HIV positive when I married him. But he did not tell
me about it. Shortly after marriage, I had a stomach problem and, on
testing, found I was HIV positive. I had studied nursing in class 12
so I knew about HIV, that it was a deadly disease. The doctor didn't
reveal the news to me but to my cousin who had accompanied me in his
car. After this, my cousin took me to the bus stop and told me to
take a bus home. A friend, who knew my status, stood by me, but my
own father and family did not. My uncle's family, however, supported
me.

Did you try and get treatment?

My uncle took me to Madras where a quack offered a cure for Rs 200 a
day. My husband, who died later, deserted me. I started learning all
I could about HIV/AIDS. I gathered the courage to approach the
police, to try and get my dowry back from my husband's family and
also to get my share of my father's property. But, despite my best
efforts, I failed.

What made you come out in the open with your status?

I wanted to give courage and hope to people, like myself, who face
stigma and discrimination. I was determined not to let the virus beat
me. I forced myself to overcome fear and think positively. I began to
think of how I could work effectively to better the lot of women like
me, and that is how I have ended up as president of the Network.
Also, I didn't shy away from interacting with the media and talking
about the issues which concern those with HIV.

What can be done to generate greater awareness about the virus?
Information about HIV must be widely disseminated in schools. As for
the media, it must avoid sensationalising the issue as it did when it
published a report about an HIV positive woman being stoned to death.

Do you think government policy as it stands today is effective?

The government policy focuses only on prevention. But with four
million HIV positive people in India, we also have to address the
issue of care. I am fortunate in that I can afford to buy anti-
retroviral drugs worth Rs 2,400 every month. I have money from my
salary as president of the Positive Women' s Network.

Is the medical fraternity adequately sensitised on the needs of those
living with HIV?

Most doctors don't know much about opportunistic infections that come
with HIV. In most government hospitals, the staff regard HIV positive
people as immoral and speak to them in a harsh and vulgar manner...
As for AIDS vaccine trials, they have failed in other countries.
Critics allege that too much is being made of HIV when India faces
enormous challenges from diseases like malaria and TB. Remember, HIV
has no cure at all. It has to be taken far more seriously.

Do you think attitude towards people with HIV is changing for the
better?

Yes, but only in high-prevalence states like Tamil Nadu. In our
centres, for instance, the counsellors themselves are HIV positive
people. So, they are able to comfort the positive people who come
there.

Are there any particular problems that women with HIV face?

There is far greater discrimination against them. Socially, they are
shunned as immoral. Economically, they have far less access to
medication.

What are the key issues that need to be addressed now?

One, to ensure that HIV positive people get treatment. At present, the
attitude is: 'Why waste money on treatment when the person is going
to die anyway?' There must be changes in legislation to see that a
positive person is not denied her property, as happened in my case.
Another issue is that pregnant positive women only get treatment for
the duration of the pregnancy. The idea being to prevent mother to
child transmission. There is little concern about the post-pregnancy
stage. And, as I said before, in many cases the media hype has worked
against us. Take the case of the two HIV positive children in Kerala.
Before the news of these two children in a Kerala school came out,
things were not too bad. But once the media got on to the story, with
many reporters laying siege to the school, the mood changed, with
parents insisting that they wouldn't send their children to school if
these two stayed on, etc. Indeed, the story had a domino effect, with
many other school with HIV positive children facing a similarly
hostile response from parents and teachers.

What about political commitment, do you see any change there?

Yes, there is greater acceptance that the pandemic has to be dealt
with. More politicians are now willing to speak on the issue. Of
course, all this has to translate itself into action, but that will
take time.

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