Facing fear

THE calendar on the gloomy walls of Sushila Patil8217;s two-room home in Hanumantpur village is the only bright spot in an otherwise ill-lit room. It is the first thing that a visitor to the Patil household will see and it clearly tells them what Sushila expects. Written across the calendar in bold, black letters are two sentences 8212; 8216;8216;There is a time gap between HIV and AIDS. So don8217;t kill me with discrimination, I8217;m still alive.8217;8217;

And that is what a determined population of HIV positive men and women are telling themselves every morning in their homes in Sangli district in the western Indian state of Maharashtra 8212; a region infamous for one of the highest HIV/AIDS prevalence rates in India.

8216;8216;Most people think it is just about waiting to die, but I know it is all about wanting to live,8217;8217; says Sushila. 8216;8216;In my village and in Sangli people are beginning to understand that. But everywhere else, it is going to take a very long time.8217;8217;

Hanumantpur is a non-descript village in Sangli district. Once called India8217;s 8216;mini Paris8217;, it was frequented by rich Arab tourists seeking medical care. Today the Sangli-Miraj belt of south-west Maharashtra is known for its battle to contain the HIV/AIDS virus. With at least one man from every household working outside the district, it is a region with a large population of 8216;8216;non-resident men8217;8217;.

From porters at the Mumbai railway station to gold refiners across the country, men from Sangli are working everywhere. And back home, where their families wait for them, people are wary of the 8216;8216;virus they bring back with them8217;8217;.

IN Sangli district, two numbers are steadily on the rise. First, the number of people who can rattle off facts and figures on HIV/AIDS. Second, the number of people who are suffering from the disease.

8216;8216;There is no doubt that on ground the epidemic is spreading quite fast,8217;8217; says Meena Seshu of non-governmental organisation Sangram. And in this small but relatively prosperous belt, where HIV/AIDS has almost become a way of life, there are many housewives like Suvarna who are looking for answers.

An unemployed post-graduate in Marathi history, Suvarna married her undergraduate husband in 1996. Unlike most of the positive housewives she meets at a support group, her husband did not work out of town. Instead, every day when he went to work in the nearby sugar factory, he promised her a great future. Two years ago, that dream came crashing when he died. And then her one-year-old son died and she was told of her own HIV positive status.

Before the gloom of the past can settle on her home, she quickly smiles and starts talking about her best friend Shobha. 8216;8216;Her story is a repeat of mine,8217;8217; Sushila says.

Every day, Sushila and Shobha meet at an ageing Laxmi8217;s house. In her home, there is no discrimination. They share a cup of tea, gossip and joke about the village headman. 8216;8216;No one in my family has yet been diagnosed with HIV/AIDS, but I have seen many come and go,8217;8217; Laxmi says. 8216;8216;We know all about the disease, from television and radio. We are not afraid.8217;8217;

IN what is slowly becoming a 8216;8216;region of widows8217;8217;, Ashok is a lonely man fighting a losing battle in Turchiphata village, 15-odd km away from Patil8217;s home. Satpude8217;s movements are slow, his eyes sunken and his spirit broken. As he fights against the virus, he also struggles to ensure a secure future for his family, including his HIV positive wife.

Like so many men from the region, Satpude worked in the diamond polishing business in Mumbai for 15 long years. After completing class VIII, Satpude followed his father and brother to the 8216;8216;city of dreams8217;8217; and came back home only to marry. Within a year of his marriage, he was sick, tested positive and became a statistic.

8216;8216;Today it is possible to map families in villages and see how many are affected by the epidemic,8217;8217; Seshu adds. 8216;8216;Ante-natal care figures also indicate a very high positive per cent. The survey is not being properly done so figures will always be debatable, but in villages, every third household is affected.8217;8217;

Dr S S Gore should know. His clinic, set amidst sugarcane fields and opposite the now defunct sugar factory where Patil8217;s husband worked, has seen the transition.

8216;8216;What I see is the real picture. No statistic will ever tell this story that unfolds before me every few months,8217;8217; says the young ayurvedic doctor. 8216;8216;They come to me with common ailments and in so many cases it turns out that they are HIV positive. Today if I tell anyone to get even a routine blood test done, they immediately assume the worst.8217;8217;

An hour8217;s drive from Gore8217;s clinic, Dr R D Thombare8217;s clinic in Pare village is also fighting the virus. His lab technician comes up with at least one positive sample every six months.

BUT with the first case of a positive couple marrying and settling down in Sangli hitting the headlines recently, there is new found acceptance and hope for all the housewives in the region.

Slowly, widows are coming out in the open, picking up jobs and forming support groups to help each other cope.

8216;8216;We meet and talk. It works wonders for us,8217;8217; says Manisha, who is part of the Aamhich Aamche organisation. And the biggest indicator of all the change is the out patient department of Sangli8217;s largest public hospital. Every Tuesday, outnumbering the women lining up outside the maternity window, is a long queue of people waiting for their turn for free anti-retroviral therapy ART.

Down the corridor from where these hundred patients are awaiting treatment, medical social worker Uday Rao Jagdale has seen the numbers grow. 8216;8216;Even today, I find it almost unbelievable that hundreds of men and women stand openly in this queue, awaiting treatment,8217;8217; he says.

The Sangli civil hospital has 1,691 registered HIV/AIDS patients. And once a week, when their ART room is opened, there are over 1,000 people who queue up to meet the doctor. The ratio of men in this line is still much higher than the women, but Jagdale believes that is also slowly changing.

Pathologist Dr Shantanu Deo agrees. Head of the microbiology department at the 108-year-old Sir William Wallace Hospital in Miraj, he says he is witness to Sangli accepting the problem.

8216;8216;You may not see any AIDS information posters up in this district but every man, woman and child knows what the disease is all about,8217;8217; he says.

The Maharashtra State AIDS Control Society MSACS AIDS surveillance report states that as of February 2004 there have been 9,569 AIDS cases in Mumbai, 2,507 in Sangli, 1,026 in Pune and 636 in Nagpur. Further, their statistics state that around 128,011 people have tested HIV positive in the state between August 1986 and February 2004.