Kuch to Sharam Karo India...

Yesterday we visited a trust named “Aadhar” that works for counselling and upliftment of HIV+ people in and around Ahmedabad, run solely by HIV+ people. Directive of the visit was to identify where the problem lies, in terms of acceptance of HIV+ people in the mainstream. To be very honest, I went there with a notion that the uneducated and lower strata of our society would be the one that outright rejects the PLHA (“People Living with HIV/AIDS”). However, the stark contrast in reality has not only mortified me but has also made me think that, is it the lack of awareness or is it the lack of empathy which is the main problem we are facing here. This blog is a part of that loud-thinking.

We are all aware that immorality and unethical behavior has penetrated deep across all professions, but I could never have thought that people would stoop so low so as to make money and gain publicity out of somebody’s ill fate.

Of everybody else, one would expect at least the doctors to be aware of what HIV is and hope that they would not be a party to this stigma against PLHA. Well, experiences tell a different story. Mrs X’s 16 year old son needed a blood transfusion, but the local doctors in nursing homes in their locality refused to stick a needle into the boy stating that they were not trained enough to inject a needle in a young kid. A doctor who can’t inject a needle, well, that was a first timer for me, and to add to it a lame excuse that the 16 year old boy to be a kid. The ones in civil hospital did something more stupendous. The boy had had excessive bleeding from his leg and had very high fever. These symptoms prompted the doctors on duty in the civil hospital to conclude that this was a case of orthopedics department and not theirs. Bleeding + fever = ortho; ya we sure buy that. The orthopedic rejected the patient saying it needs to be treated by HIV/AIDS department (reason being his mother was HIV+). And after a lot of efforts at around 3 am at night Ms X managed to find a doctor who would treat her ailing son, the lab assistant who was supposed to do an MRI scan refused to do so, for he didn't want to use the equipment for someone whose mother is HIV+. Even I wouldn't have believed the story had it not come firsthand to me, so I won’t blame you if this doesn't sound real to you.

The counterparts in private hospitals are using this as an opportunity to make some extra bucks. It’s a straight formula there. If you are HIV+, you would have to pay twice the money that would be normally charged. The reason being that they need to procure separate “set of equipment” to treat PLHA.

Another so called responsible section of our society, the media, comes up with an even more brute face. Mrs Y tells us that on world AIDS day when she approached a reporter from a renowned daily, requesting him to publish Aadhar’s story and motivating people to join/approach Aadhar, the reporter did not find the story compelling enough to be published. Next day there was a half page article in the newspaper with Mrs Y’s photograph, mentioning minute details like her husband’s name and profession, her kids names even their school names, making life hell for all of them. When the reporter was confronted that how could he publish the story without permission, all he had to say was “Sorry” and I am pretty sure there would have been a wry smile behind that sorry too.

Govt. provides a Rs. 2000 pa grant for education to a kid whose parents are HIV+. The fund goes directly to the school and hence the principal can identify the kid whose parent/s are HIV+. However I don’t know how to react to a situation where the person who is supposed to be the educator, the one who should ideally spread awareness for acceptance of PLHA, suspends a student from his school because of the obvious reasons. And then people like me would debate that education is the only cure for such menaces. Doesn't seem so anymore.

Policy paralysis is apparent in almost everything that happens in this country. When it comes to HIV/AIDS, it seemed that the govt. had done its bit very well, until very recently when NACO temporarily stopped all it’s funding for organizations like Aadhar, stating a discussion on change in policies, post which everything was supposed to be brought back to normal. The discussion is going on for the past one year and bodies like Aadhar are running from pillar to post to stay afloat. The red tape cuts in here too.

If you think you now understand in which direction the roots of this problem is headed, you need to read the following first. There is another facet to this problem. I was discussing with Mr. Z (another staff member at Aadhar, himself HIV+) about a few entrepreneurial ventures that can be taken up by them to provide employment to PLHA given the suspended funding from NACO. The response was shocking. The government, as I was told, has many schemes and facilities for HIV+ people. A nutrition ‘bhatta’ of Rs 500 pm, free medicines, education ‘bhatta’ etc. etc. and as a result when Aadhar approaches HIV+ people to turn up for some event or to participate in some venture, they bluntly refuse stating that what the govt. provides them  free of cost is sufficient and they don’t see the need to work any further. “Sumeet bhai ab hum kya Karen, aap btao”, that’s what a teary eyed Mr. Z said to sum up this chat of ours and honestly, I was too stumped to say anything in reply.

May be the schemes are there in place, but the ones that would implement them and the ones who would benefit from them, both have not got the right message. I very well know that writing this blog is not a solution to anything, but I don’t know what better to do, do I need to educate doctors, principals, the media, and the government? I am a firm believer in action but in this case I really don’t know where to start with, may be a more detailed understanding is what is required at first.