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The start of our HIV awareness programs in Perambalur district, India

 

In January-February 2001, our secretary Dr. Koen Van Rompay spent several weeks in the rural villages of READ and Y-NEEW. He had amazing, but also shocking experiences when he realized the low level of HIV awareness.
Together with the help of his friends, he decided to embark on a mission to raise more HIV awareness in a number of these villages.

For a short summary of these HIV programs at READ from 2001 through 2004, you can read the article entitled "Motor-biking through rural India on an HIV mission", (click here to open or download the pdf file) published in the November 2004 issue of the journal "AIDS".
You must have Adobe Acrobat PDF Reader to view the downloadable files. If you do not already have Acrobat, please download it for free from Adobe first.get acrobat

For a more detailed story, read his story below.

Koen in Indian school

As narrated by Sahaya's founder, Dr. Koen Van Rompay

 

March 2001

Dear friends,

Through this brief report, I like to share my experiences during my recent visit to India.

As a profession, I am doing AIDS research at the University of California, Davis. In 1997, I was invited to attend an AIDS conference in Madras, in the South of India. This was a life-changing experience for me, as I became exposed to the problems of developing countries. Fortunately I became good friends with several social workers who had started small grass-root organizations. They are working hard to promote social and educational development in a number of rural villages in Tamil Nadu, India. Their motivation and dedication to help the poor inspired me, especially considering that these organizations are struggling financially on a daily basis. It made me realize that a little bit of effort from our side can make a big difference there....

I started to collaborate with these organizations, especially READ (Rural Education and Action Development). Since then my friends and family have joined in our efforts. About a year ago, we started Sahaya International, a registered 501(c)3 nonprofit organization, so that we can hopefully become more successful in raising funds and implementing urgently needed programs.

Recently, during the month of January, I spent 4 weeks in these villages to do some volunteering work, and to visit the many programs that we are helping to support. It was an amazing experience to interact with the many people....especially because these people don't get exposed a lot to the outside world, so they always were very interested in seeing me. The fact that I was the only white-skinned person among thousands and thousands of villagers probably also played a role..... Most people don't speak English, so whenever my friends weren't around to translate, I would use the few words of Tamil that I knew, and a lot of hand gestures to communicate.....and it worked!

As I mentioned, I am an AIDS researcher at the University of California in Davis. Therefore, while visiting the rural villages the first few days of my arrival there, and talking to the women self-help groups, I was very shocked when I found out that the level of HIV awareness was so low! The saying "one has to see it to believe it" is true.....because on this trip, I realized how bad the HIV epidemic in India is going to get.... If we don't do something right now, in 5 or 10 years from now it will be as bad as in many African countries, where 30% or more of adults have HIV and where whole villages are being depopulated.

Despite "official" reports that 95% of rural people in this state have good HIV awareness, it became very clear to me that 95% have little or no awareness.....or they have completely the wrong information! Many people think that HIV is being transmitted through mosquitoes....or that it can be transferred by eating food that has been prepared by somebody who has HIV. The newspapers and radio play a big role in spreading many of these misconceptions, and since approximately 50% of the people here are illiterate, false rumors can spread like wildfire and linger for long times. Many people don't have any clue about sexual transmission of HIV and the ways to prevent it. And people who are identified as HIV-positive really have to hide their status, or they get stigmatized and often get thrown out of their communities.... My friend told me that a village in this area is being stigmatized as being HIV-positive after some government officials did some testing, found a few women to be positive, and posted their names in public! I don't know what happened to the women, but I assume that they've been outcast of their communities.....

One night, we met in total secrecy an HIV-positive young, educated woman who lives in our village. Except for a few close friends, nobody else knows that she's HIV-infected. She got infected by her husband who worked in another part of India, and who only had come home to sleep with her a few times during their marriage....and infected her! Her husband had died, and now she was living in much fear. While talking to her, it became clear to me that she had been told so much wrong information by her doctors (quacks), such as that she should not eat any meat.....or even worse, that she should fast a lot! I couldn't believe my ears! Proper nutrition is essential to the survival of HIV-infected patients, because HIV infection by itself already causes weight loss and wasting! She had also paid so much money to a local doctor for some powders (traditional Sidha medicines). She showed me a few small jars, without a label, but with some colored bad-smelling powder..... I realized then that most HIV-infected people spend all their money on local quacks, who sell them expensive but totally ineffective drugs. Some good doctors that I know told me afterwards that some of these medications are often even highly toxic chemicals that can kill... Her "doctor" had also never given her appropriate information about HIV transmission. She was so worried about transmitting the virus to her 3-year old daughter (who is fortunately HIV-negative) through hugging, that she was considering to take her child to her parents who live far away and have them raise her. Her daughter is her most important treasure in her life..... I told her that she should not worry about hugging the child, or eating from the same plate, and that both she and her daughter need eachother for moral support. I was also able to provide her with information on where she could go to find reliable doctors and a pharmacy to buy some antiviral drugs. Because she is still in the relatively early stages of HIV infection, appropriate nutrition and some antiviral drugs can really help her a long way! Although it was shocking for me to witness this, I felt partially fortunate to be here at this time, so that by giving her the right information, I was able to provide some comfort and hope... It is easy to touch a human life here....

There were other touching moments during my trip... January 27 was an emotional day, as Selvam (my friend of READ) and I travelled half a day from our rural village to visit an AIDS clinic run by doctors that we know (Dr. N.M. Samuel, Dr. Mini Jacobs and their colleagues of the Dr. MGR Medical University of Chennai). It is in a small city in a rural area, and many truck-drivers pass through it. The doctors are running a program in which pregnant women can come in for free testing and counselling, and if they are identified as HIV-positive, they can receive a small amount of drugs to reduce the chance that they would transmit the virus to their baby during the delivery. The doctors explained to me that approximately 3% of the pregnant women who had come to this clinic are HIV-positive! This is the start of an exponential explosion in this area.....After the visit to this perinatal clinic, the doctors took me to the AIDS ward in the hospital. It was for me the first time that I visited an AIDS ward; there were 6 AIDS patients there (3 men, 3 women) who had lost or spent everything and now came here to die...... Their faces looked very emaciated. The doctors are frustrated, because they can't find the money to give these people any medication.... it took the doctors a lot of effort to simply get a room from the government in which AIDS patients can come and get a bed....to die.

Looking into the eyes of these patients, and realizing that this will await so many more people in all the villages that I had visited the previous weeks, I became very quiet and felt helpless. Here I am, the AIDS scientist from the USA, who represents all HIV researchers of the world....who has nothing to offer....nothing to console these people.....not even with hope.... It is one of those images that has been staying fresh in my mind since then.....

What really broke my heart was one man, who was very weak and very thin, whose son was sitting on his bed; this son (I estimate him to be about 10 years) has been sitting at his side since they came in the clinic a few months ago. Nobody else of the family or friends has shown up to visit or take care of the father or son; the son only walks away from his father for brief periods to get some food from the street shops. The son was visibly very sad, because his father's condition was worse today than yesterday. Nobody knows what will happen to the boy after his father dies, and the nurses fear the worst (that he would become a street-boy, and end up getting killed or abused). The father, whose fragile body was wrapped in a sheet, briefly uncovered part of his face, and tried to tell something, but because I didn't understand Tamil, I assumed that he was telling something to the doctors. Again, I was very quiet inside....

After we left the hospital, we went back to the bus station to go back to our village. As soon as I sat down in the crowded bus, and some Indian music was playing, I felt so desolate......here is this boy, losing his father, and here on the bus, people who are all dressed up are traveling, completely ignorant of the tragedies that are happening right now in their own area..... It was the day after the earthquake in Gujarat, and even though I felt sad for the many victims there, I realized that there are so many more AIDS victims even here in this part of the country that nobody cares about.....and so many orphans.....Even though I was doing my best to be strong, I couldn't help that some tears ran out of my eyes.

On the bus-trip back, Selvam and I were both very quiet.....I did a lot of thinking to try to find a practical solution for the boy, and was waiting for a quiet moment on the trip to start talking about it to Selvam. But Selvam had apparently been feeling the same, because suddenly he looked me in the eyes and said "we have to do something for the boy!" Those words gave me some comfort. We discussed it, and we made up our mind to have READ adopt the boy, if necessary, so that he could come to the village and then we could further care for him, and send him to school and so on. Thus, as soon as we arrived back home in our village late that night, we called back the doctor, and told her of our plans, and that they should not let the boy leave when the father dies..... It was a good thing we did it, because the next morning they called us back that the father had died during the night.... It suddenly dawned upon me that if we hadn't visited that clinic the previous day, the fate of this boy would have been totally different now.....

We know there will be many more orphans in the future throughout India, so we'll try to start an orphanage here, and then look for sponsorship. This whole experience also taught me another lesson: never postpone until tomorrow what can be done today! Tomorrow may be too late to save a person.

Although I have no training in being an HIV awareness/prevention/safe sex educator, I figured that the situation was so urgent that I just had to do something during my stay here, even if it was total improvization. Anything is better than nothing!! It is so important to just provide these people with the simple but correct information, .....because it can save lives! And my friends agreed, so we decided we would do HIV awareness programs!! During the rest of my stay, our regular schedule included visits to a number of women self-help groups, and each time we would give a brief lecture about HIV and then spend the rest of the time answering their questions. The women were a very easy audience to lecture to, because they paid attention, and they asked good questions.

We also got invited to visit some youth groups! The first invitation was only with a few hours notice, so my friend Selvam (who had to translate everything) and I were mentally prepared to arrive in their village, and sit down with a group of youth in a big circle and answer probably a lot of very personal questions that they had about sex, in a very informal way. Well, when we arrived in the village, it turned out that we were part of a cultural program.......So we had to give our lecture on a simple stage (made of some sand that was piled up into a platform)....and the front half of the audience consisted of small children! This was especially tricky when the youth were allowed to ask their questions, and I had to try to give them an honest answer while trying to avoid that many of those small children would go home and ask their parents a lot of questions about words that they remembered......
And youth are the same all over the world....so there is always at least one in the group who would try to ask me some tricky question, like "Is the fear of getting HIV the reason that I'm not married yet...?"

youth youth
Our HIV awareness programs for the youth groups of Kovilvazkkai (left) and Vrinikaranpathi village (right).

In the weeks after that, we did more HIV programs for youth groups and high schools, and with each program we got better and better. To avoid that youth would be ashamed to ask questions in public (especially in front of their teachers!), we would hand out pieces of paper on which they could write their questions. Many of the questions gave me a good impression what went on in the youth (or in their minds), so this helped me to improve each program. My friends who had to translate did an excellent job, because it wasn't always easy for them, especially when I was trying to explain a safe sex practice for which no Tamil word exists!

I must admit that I had never imagined myself ever standing in front of a huge class room talking about some of these things.....especially considering that I have never had any special training in this, that I'm quite shy, and that I was raised as a catholic. I guess that sensing the urgency of the situation forced me to overcome any fear and "just do it". Because if we don't inform them, nobody will, and many of these youth will expose themselves unknowingly or unwillingly to the danger of HIV!

highschool Koen in school
The Andimadam high school students (left) are listening to my explanation of the ABC of HIV prevention (right): Abstinence, Be faithful, Condom/safe sex .

 

The response was always very good. The youth was very thankful that we gave them correct information and that we dismissed some false rumors about HIV and safe sex. Being a white-skinned HIV scientist from the USA, they believed me! So after the programs, they would ask me for my autograph and address, and they wanted to be on a photograph with me. It was like being a Hollywood movie star.......not that this interests me, but I played along with it, because I figured that if they save that piece of paper, and who knows, even frame it, they would hopefully get reminded of me and my messages on a regular basis, or they would read again the HIV prevention brochures that we gave them.

Another tool that we used as part of our HIV programs were frisbees! Before I had left from the USA, I had received a whole box of frisbees from the World Flying Disk Federation, for which I was very thankful. Although my original intention had been to simply donate these frisbees to schools and youth groups, I realized their potential to boost HIV awareness. At the end of each HIV awareness program, we would donate 1 or 2 frisbees to the school or youth group, to thank them for their attention and their participation. They were always very grateful for this gift...but most importantly, I realized that whenever they'll play frisbee, they will get reminded of our program, and our simple messages! And for some of these youth, it may make a big difference in their life.....

The teachers and other adults didn't object to our programs for youth. Even though we broke sometimes cultural barriers by mentioning taboo topics, it was also clear from our conclusion of the program that we tried to instill a sense of responsibility in everyone: since we, the HIV researchers, still have not come up with a cure or a vaccine, these youth shouldn't depend on us.....or on the government, or on their peers...... No!! Their future as an individual, the future of their families, the future of their villages is all in their own hands....it all depends on them making the right decision at the right time!

The way to combat the HIV epidemic is not by throwing the HIV-positive people out of the villages. What fuels the epidemic is ignorance and indifference.........ignorance of the majority of people, and indifference of those who have the power to change it. By creating good awareness and promoting responsibility, we can fight the HIV epidemic......because we can give these people control over their lifes and the knowledge to make the right choices! But a prerequisite to allow these people to take charge of their own life and health is that somebody takes a little bit of time and effort to just give them that plain simple information about HIV......

It was very hard for me to leave India....as I felt torn between my AIDS research and continuing these direct interventions... Although I know that on my next visit there (in December 2001), I can do more programs, in the meantime I want to continue making a difference....

It is my hope that we can inspire other people to join in this battle, so that many other rural areas in India and all over the world can be covered!

They need us! If we don't do it, nobody will!

Koen Van Rompay
Secretary,
Sahaya International

high school students

(To read more stories written by Koen, click here).


Although significant progress has already been made, there is an urgent need for funding to especially expand our support and care programs (including orphan programs), and expand them to more villages that are currently not covered
You can help to support these important programs.



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© Sahaya International, 2017; Webmaster: koen@sahaya.org

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