Give us a little information about the activities you and your organization are into.
Going down the memory lane, in 1993, National AIDS Control Organization (NACO) of the Indian Government conducted a study in different cities of India. The target groups were the high risk behavior groups who are likely to be infected by HIV, like the sex workers, homosexuals, slum population, migrants or eunuchs. I was the coordinator for that study in Gujarat. This was my first effort to understand HIV as well as AIDS sociologically. It was then that I worked with these groups in Ahmedabad, Rajkot, Vadodara, Surat and Dadra & Nagar Haveli. We realized that it was very important to work on this issue in Gujarat.
One of the objectives of that study was to find NGOs who would be interested to work for this issue in the future. Then, it was only Jyotisangh, founded by Mahatma Gandhi in 1934, the NGO that works for women, that was interested in working for HIV/AIDS. I supported this NGO as a technical consultant and now, the entire project is handed over to the women sex workers. This is called CBO – Community based organization.
What inspired you to work for such a sensitive issue?
The first inspiration is my subject – I teach Sociology. I have witnessed that there are a lot of groups that are never included in our course of study like the sex workers, homosexuals or the eunuchs. So the thought of imparting awareness about these groups to people always troubled me. Also my family background was such that I was always told to be good to common and marginalized people, understand their problems and talk to them.
What were the challenges and reactions you had to face when you started working on the issue?
When I joined Jyotisangh, the biggest challenge was the NGO’s negative attitude towards the sex workers. It considered this work a social evil. So the first step was to change its leadership behavior.
Another challenge was to face the fraternity of the teachers here at the University. They ridiculed working with this group of sex workers and at times, even doubted me!
Lastly, there was no history of people working with the sex workers in Gujarat. So even we had little knowledge and had to grow on our own.(Cont. from page- 1)
There are many notions that prevail in the society, the very first being HIV and AIDS are the same.
What are the other such perceptions?
Yes, right! The biggest perception is that HIV and AIDS are the same. HIV is actually a virus, through which a disease called AIDS spreads and that too after a span of 6-8 years. Due to this notion, people treat a HIV Positive person as a patient of AIDS and do not allow him/her to be a part of the society. Secondly around 86% of the people suffering from HIV in India have got the virus due to unprotected sex. But due to no scientific knowledge about HIV among the people, an HIV Positive patient is considered characterless and the entire issue is linked to our moral values.
A third important problem is that the HIV patients are not allowed to continue their social relationships. HIV spreads only through 4 main reasons: unprotected sex, virus from mother to the child, through infected injections or intake of such drugs. But people have the notions that HIV spreads by being with an infected person or the virus spreads from the air. They also believe that at times needles are pierced into, just to increase the members of the AIDS community!
What can be done to change these perceptions?
I very firmly believe that the first step to change these perceptions is to impart sex education. At present it is banned in Gujarat. If we’ll consider sex education as a taboo, it won’t be possible for the next generation to understand the concept of HIV scientifically and the misconceptions among them will increase.
Secondly, the talk about HIV should not be limited to just World AIDS Awareness Day but throughout the year, we need to work on the issue.
Thirdly, it is very easy to avoid getting infected from HIV. But the problem is that we try to see the virus as a medical issue and not a social one. There is a simple A-B-C-D formula to fight HIV. ‘A’ is avoiding sex, but this may not be possible for all. So then comes ‘B’ which says be faithful to your partner. Again if this is not possible, try ‘C’ that is use of condoms. And if A-B-C is not followed, then ‘D’ is for death.
What is the current status of AIDS patients in Gujarat/India?
Until now, Gujarat was considered to be a low prevalence state, which means that less than 1% of the total population was affected by HIV. But recently a report of NACO revealed that Gujarat has entered the middle prevalence states’ list as per the data of 2009. However, the overall number of HIV Positive people in India has decreased but in Gujarat the spread of HIV has reached around more than 1.50%, which is much above the national average of 0.30%.
People consider HIV as well as AIDS to be very dangerous. Is this right? If not, what should be done to consider these like other diseases?
The biggest problem is that we haven’t achieved any breakthrough for HIV yet, there is no vaccine available. So, when medical science cannot progress in any disease, its fear among the people rises. But, the fact that people don’t understand is that the HIV Positive people whose CD4 count is less than 200 are called AIDS patients. Now, if the patient takes ART –Anti Retroviral Therapy, his/her immunity to fight the diseases is maintained and the life span increases. But this awareness is lacking and HIV/AIDS lead to death is a very strong belief.
What types of programs are conducted by different organizations that work for this issue? What is their impact?
The first huge program is that of the Government that is called TI – Targeted Intervention. These projects target the groups who are most likely to get infected by HIV. TI identifies them, makes them aware regarding HIV & AIDS and this group then takes the project further.
Another type of organization is run by the HIV Positives themselves. Their network is called Gujarat State Network of Positive People (GSNP+).And the third type is the CBO – Community Based Organizations.
And there is a huge impact of such organizations in Gujarat over the last 10-12 years. First impact is that these marginalized groups were able to enter the main stream population of the society. Secondly female sex workers have started explaining their clients about HIV that may lead to AIDS and this has helped to generate a lot of awareness. Thirdly, people have started demanding safe blood as this disease spreads through blood too.
What are the common problems faced by the AIDS patients?
The first being the psychological problem; as soon as you know that you are infected with HIV, you start feeling that now there is no future. This type of hopelessness and helplessness shatters them.
Second problem is that the society does not accept them and there is no one to turn to when you find out that you are Positive.
The third is the monetary issue. Just recently, Government started giving the ART drugs free of cost at the Government hospitals. But apart from the medicines, the cost of eating healthy food due to which the immune system would stay fit is very high.
What are the efforts on the part of the Government?
I believe that the Government of Gujarat and that of India has taken this issue very positively. There are 5 year plans for this issue and the current policies will end in 2012. It includes free medicines for the HIV patients, education for their kids, and concessions for travel as the patients need to go to the hospitals frequently etc. the Government also supports the Network of Positive People and gives a lot of autonomy to the NGOs.
Your message to the society.
Let us develop a scientific temper for HIV. This will increase our knowledge for the subject, which in turn will lead to sympathy. Also, I will again insist that the new generation of Gujarat should be imparted sex education and the ban should be lifted immediately.
(Dr. Gaurang Jani, Associate Professor, Department of Sociology, Gujarat University)
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