From Goa: Being HIV Negative

[Guest guest]

HIV NEGATIVE

Preetu Nair Gomantak Weekender June 5, 2005

A couple of weeks ago, the newspapers reported yet another innocuous case of

drowning in Bogmalo. It later turned out that the man who died was Arun Tomar,

the president of Zindagi- a network of 157 people living with HIV/AIDS in Goa.

Tomar died soon after he told Weekender that the heartrending suicide of a young

man and his pregnant wife in Vasco, on April 15- which was passed off as a

‘mysterious’ suicide- was because the couple was HIV positive and didn’t want to

bring a child into this world who may not have survived. The bottomline is this.

As we busy ourselves with by-elections and forming governments, our war on AIDS

is being lost everyday. Because we have not been able to remove the fear of it.

Ever spared a thought for what a person who is detected with HIV positive goes

through in life? The depression from the disease and social boycott are a deadly

combination that often forces people to take drastic steps. Despite every effort

made, the number of people infected with HIV/AIDS is rapidly increasing in the

state and now it’s the young couples who are falling prey to this dreadful

disease. And Rajan and Savitri were no exception.

Rajan and Savitri got married in 2004. Belonging to a middle class family, the

couple had their share of joys and sorrows. There was added joy and celebration

in the family when they discovered that Savitri was in the family way. However,

the joy was short-lived and their dream of hum do, hamara ek collapsed; when

during the final stage of pregnancy Savitri was referred to Goa Medical College

(GMC). At GMC, the couple learnt that Savitri was HIV positive. The couple were

trying to come in terms with the news, when the husband who had undergone a test

was also detected HIV positive.

The doctors at GMC gave a delivery date, but the couple were least interested in

the date. Their biggest worry was, “If we don’t not live for long, who will look

after our child. And what if the child was also born HIV positive”. So they took

the drastic step, without even sharing the problem with their family members.

All this was revealed to GT –Weekender by Arun Tomar, President, Zindagi, Goa.

Zindagi is a network of 157 members living with HIV/AIDS in Goa. However, a week

after Arun, divulged the information to GT, he lost his life when he went to

Bogmalo beach for a swim and slipped deep into the sea.

Arun revealed that the couple committed suicide once they learnt they were HIV

positive. He said that they learnt about the same from a Vasco police personnel

who visited their organization, as well as, from Humsafar Trust saying that they

found some Information Education Material (IEC) related to HIV/AIDS prevention

and information about life after infection with HIV/AIDS from both the

organisations at the couple’s house.

“Later we met some people from the locality in which they stayed and we learnt

that once they were detected HIV positive they were upset and so they committed

suicide, as they feared that their child would also be born HIV positive,”

informed Arun.

However, he admitted that they didn’t find the medical test reports at their

residence. “We know that once a person is tested HIV positive, they don’t want

to keep any document through which people can come to know that they have

HIV/AIDS. So most people living with HIV/AIDS either tear off the report or burn

it because of the stigma attached to HIV/AIDS,” argued Arun.

The NGO’s working with HIV positive/AIDS patients said that such instances are

not rare. They insist that there are many who have committed suicide, without

accessing care and support services. “Most of the people are still living in

isolation in Goa. They experience stigma and discrimination everyday. Many don't

have proper information on life after infection,” they say.

People with HIV/AIDS can live many more years of quality life. “Any person

tested HIV+ve should be referred to Peer Support Group or Local network of

People living with HIV/AIDS, because though counsellors counsel them, yet they

feel alone, but if they get emotional support from people living with HIV/AIDS,

it works more effectively, as they are able to connect and understand things in

a better fashion,” said Tomar.

“Had the couple got proper information about life after infection with HIV/AIDS

and also the knowledge that now there are medicines available at GMC which

reduces the risk of a child getting infected with HIV to a miniscule, they would

probably have not taken the drastic step,” he said

According to them, it is important that when government hospitals find a patient

living with HIV/AIDS, they should refer the patient to Positive Networks or a

community based organization where they can be provided with better information.

Pinheiro, who works with Positive People, one of the oldest NGO’s in Goa

working with HIV/AIDS patients said, “Counselling helps if you give quality

counselling and spend enough time with the patient. However, the counselling

centre at GMC is understaffed. So most of the time counsellors tend to counsel

the patients in haste. Ironically, though they focus on pre-test counselling,

they don’t ensure that the patients come back for post-test counselling. Even

the data available with Goa State AIDS Control Society (GSACS) reveals that the

number of patients who went for post-counselling after pre-test counselling was

very less in 2004,”

THE WAR IS ON BUT PEOPLE ARE STILL LOSING LIVES

TIME Magazine in its latest issue has done a cover story on AIDS in India, where

they say that India’s AIDS crisis is huge and growing but both its government

and wider society have yet to acknowledge the scale of the problem. NACO says

that 5.13 million Indians are officially estimated to have HIV/AIDS, but only

about 100,000 have braved the stigma to come forward for treatment. Such

secretiveness makes it all the more difficult to get any accurate sense of how

widespread the disease has become. Worse still is the ignorance about HIV/AIDS.

Even GT in a two part-series in March had shown the high level of ignorance in

Goa about HIV/AIDS. A test drive through rural Goa showed one thing clearly,

AIDS is just a name. The HIV is spreading (about 46 percent of HIV cases were

detected in Mormugao and Salcete and another 26 percent from Bardez and

Tiswadi), yet many in the remote villages in Goa have not even heard of the

disease.

Even the report of the Comptroller and Auditor General of India (CAG) for the

year ended 31 March 2003, said that GSACS didn’t implement ‘intersectoral

collaboration’, a programme for sharing in work of generating awareness,

advocacy etc among people with HIV/AIDS.