Live positive
MEENA MENON
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While testing HIV positive certainly does not mean death, the fact is that the needs of those infected have to be better assessed and understood.
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HAVE HOPE: Positive messages need to be sent out. PHOTO: ARUNANGSU ROY CHOWDHURY
MID-APRIL, three HIV positive men committed suicide (on successive days) in Mumbai, two of them jumping off the fifth floor of the government-run J.J. Hospital. Twenty-eight-year-old Sanjay (name changed) who ended his life on the morning of April 19, had tested HIV positive a few days earlier. The next day, another patient who was admitted in the same ward with a respiratory infection, also jumped off the fifth floor.
The day before Sanjay died, an unemployed sweeper committed suicide in Mulund, a suburb of Mumbai. These three deaths draw attention to the vital issue of care and support services for the estimated 5,00,000 HIV positive people in Mumbai and the fact that their needs have to be better assessed and understood.
Dr. Shalini Bharat, professor, unit for family studies, Tata Institute of Social Sciences (TISS) says, "We are assuming these suicides are due to stigma but there may be a host of reasons. Sometimes people lack understanding. They are really on the edge and often find there is no one they can turn to. They despair in terms of their socio-economic conditions or job losses, or if the diagnosis was handed over to them in a stigmatising way."
Not enough counsellors
The main issue, she feels, is psycho-social support and the hope of treatment. Well-trained counsellors can play a very central role but she says there were not enough counsellors for HIV positive people. "We have to give them hope that they can live and perhaps that's where there is a great need for value neutral advice," she adds.
The dean of J.J. Hospital, Dr. Pravin Shingare, admits that after Sanjay had jumped into the well of the staircase, he lay there unnoticed for about 20 minutes. The ward staff did inform the police that he was missing, but this is usually done after an hour or so. It is possible that no one noticed he was missing for that long. Dr. Shingare says that both the patients were counselled once at the hospital, as is the practice. However, the second patient who had come from outside Mumbai had tested at a private clinic. It is unlikely that he was counselled there.
Now the dean is thinking of repeated counselling for HIV positive people, apart from shifting the ward from the fifth floor. However, dealing with this sensitive issue will require more than fixing grills on balconies, shifting wards to lower floors or posting security guards. There is no exclusive ward for those who are HIV positive at J.J. Hospital and people are admitted according to their treatment needs. J.J. Hospital which started treating people who are HIV positive since 1989, is identified as the apex institution for AIDS management by the National AIDS Control Organisation (NACO), which is funding a range of services there, including an anti-retro viral (ARV) unit which treats people free of cost. The hospital has experts and also houses an autonomous AIDS Research and Control Centre (ARCON), which has specialised counselling services. The issue here is: how much of this wide-ranging expertise is used in an effective manner? There are about 1,600 people on ARV drugs already in a year since the unit was set up.
Dr. Manisha Sen, project director of ARCON, says that after the suicides, the centre was looking at a proposal to collate services with the hospital. "You need proper clinical psychologists, a unified approach and a team of people including a social worker, and a clinician as well," she adds. In the last 15 years, at the hospital, there have been six suicide attempts by HIV positive people, of whom four died.
Smita, a peer counsellor with ARCON, says when patients are counselled over a period of time, there is a change in their coping mechanism. "Many people don't know the difference between HIV and AIDS. They think it is caused by sleeping around but the fact that it has to be with an infected partner is not known. However, people are quite convinced of the need for safe sex. But they panic and feel testing HIV positive means death, which is not the case," she explains.
Dr. Nirupa Borges, project director of the NACO-funded Mumbai District AIDS Control Society (MDACS), says, "We need to review what is being done and when there are so many facilities available, it is shocking that something like this can happen. The awareness campaigns have made a difference but the situation is far from ideal. We have so many cases where people are leading healthy lives 12 to 15 years after being tested HIV positive." MDACS runs about 30 voluntary counselling and testing centres (VCTC) in Mumbai in all public and peripheral hospitals.
According to MDACS, there were 278 reported deaths due to AIDS in 2004 and this year till February, eight people have died. In Mumbai, since 1998, there are 23,455 AIDS cases and 1,053 deaths till February 2005. Of the 3,25,933 people tested in 2004, 13,100 were found to be HIV positive. NACO says there are 1,03,857 AIDS cases in India. The three suicides in Mumbai are a depressing and dramatic reminder that more needs to be done to help people cope. Testing HIV positive certainly does not mean death, as so many people have proved. It is these positive messages that also need to be sent out strongly in all the expensive awareness campaigns, which tend to focus more on the use of condoms and safe sex, which are no less, important.
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