India and HIV… if only…

10 11 2010

Having reality rudely smear our Middle East efforts with a good dollop of ignorance and small mindedness we tentatively entered India; packets of optimism seeds neatly tucked into our panniers. Not content with managing the pressures of long distance cycle touring (where are we going to eat? where will we sleep? which road should we take? what will the road quality be? will we lose another of Liz’s pannier screws? Have we stretched enough? Etc etc) we also spend much of our off-saddle time trying to find ways to advocate for HIV/AIDS issues; we talk to young people in the street, visit schools, visit HIV/AIDS projects, talk to ex-pat groups, and just generally do anything and everything we possibly can to try and get people talking about HIV/AIDS (we’ve even taken part in an Iranian TV programme and written a few articles for local rags). The process goes something like this … Step one – research key destinations on the route; step two – ring venues to ensure contact name and correct email address; step three – email correct contact; step four – wait; step five- try and stop Liz feeling depressed that no one has replied; step six – ring contacts to draw attention to emails; step seven – wait again; step eight- sacrifice something to Kali; step nine – potential success –  Two ex-pat groups in Mumbai are going to try to set up presentation platforms for us – super! But, as yet, it’s a no go on schools. Two days ago, however, Liz hit upon a small gem in the shape of Fr Joseph, Fr Paul and Fr Bartholomew, these three Camillian Brothers live in a small village 20km from Cochin.  They run an HIV/AIDS care centre and they invited us to visit. At 10.30am, on Tuesday, we duly presented ourselves; 40k’s worth of sweat and grim glinting off our skin in the mid morning sun prompted offers of water, juice, bananas and sweet meats.

‘The main disease is not HIV, its stigma’ said Fr Joseph leaning in intently; he has been working in the field of HIV/AIDS in India for the past 7 years; despite the wall of challenges this implies our overriding impression of this young man, dressed only in jeans and an open shirt, was that of optimism, commitment, and positivity. ‘If we could only eliminate stigma then people could come here openly, get the help they need, no need to pretend its cancer, we could really do something to stop this disease’ he speeds. ‘There is so much we could do but in India people don’t want to talk about it; hospitals won’t take people with HIV, did you know that? We are running courses to educate doctors! Can you imagine! If you are HIV positive surgeons won’t even operate on you – there was a young girl, born HIV positive, she had a problem with her knee, she needed a small operation – no surgeon would touch her!’ As he stops momentarily to catch his breath Fr Paul sighs and shakes his head; Fr Paul is an equally young man, his patient gentle voice slipping smoothly beneath Fr Joseph’s, ‘they won’t talk about sex, that’s the problem. And most Indian’s just don’t think it’s a disease they will get – poor people come to places like this (if they are lucky), poor people are the statistics, those with money go to private clinics where they pay to be treated and pay to keep it a secret, they say they have cancer or something… Anything else.  No one will ever know they have HIV, not even their family, or even their wives… until the wife dies the same way a few years later… or the child dies… then maybe someone will put two and two together… maybe. Would you like to talk to the patients? See our centre?’

We follow Fr Joseph into the main building; the centre is a simple one story building set around a courtyard, the facilities are basic; they have a consulting room, a series of 3-6 person dorm rooms, a couple of isolation rooms for those with TB, a communal area with a few books and a TV, and a small dining area. The ubiquitous smell of all things medical hangs lightly in the air as we are introduced to some of the patients.  Fr Joseph opens the door to one of the small isolation rooms, the room dark, the stale air close. ‘This is Meera, she doesn’t have long’ he whispers. The room is bare save for a solitary bottle of half finished 7-up and the small crumpled form of Meera. The bed’s steel creaks and moans as the 76 year old struggles to sit up. She smiles at us.  She thanks us for visiting. She wishes us well. She asks us to please close the door on the way out.

In the next room we meet three women, aged anywhere between 20 and 35. Anu has only just been admitted. She had been on ART’s (anti-retrovirals) but had decided to come off them to try and pursue a local ayurvedic course of treatment – this had left her immune system vulnerable and she had become an easy target for infection. ‘We hope she will regain her health’ Fr Joseph whispers rather unconvincingly, ‘using natural medication alongside conventional drugs is fine.. but coming off ART’s … it’s just uninformed’, he pauses a moment, seeming lost. A sudden loud vocal rush splits the air, a colourful women in her late 30’s stands on one hip surveying us. Fr Joseph smiles and introduces us, he tells her about our trip and she waves it away in disbelief or as blatant stupidity before dismissing us to go and see if the gathering of men in the day room can be clattered into providing her with entertainment– ‘Seeta will be leaving soon. She has been here a number of times. She works as a prostitute – just the other day she was telling me that recently she had a group of students come to her, she told them to use condoms but they refused. What could she do? She has to earn money to live. She can’t reveal her status or she will have nothing. She told them to protect themselves. They made the choice. These boys should know. They would have known about HIV… they just don’t think it will happen to them. This is how it is here.’ As we walk slowly across the lawn to our bikes, squinting into the  midday sun as it glints through the palm trees, the clear air busy with dragonflies and birdsong, he signs ‘If we could just cure stigma, then maybe, just maybe we could make a start.’

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