Why is AIDS awareness so limited, despite 20 years of national and international efforts? Is it time to devise more creative and innovative measures, such as having one health worker in each primary health centre dedicated to spreading awareness on HIV/AIDS? Bharathi Ghanashyam checks out the level of information among a cross section of people in Karnataka
“If a certain kind of mosquito bites you at 5 am in the morning, you get AIDS.” -- Shivamma (38), a pourakarmika (corporation sweeper)
“You get AIDS if you eat with, or touch someone who has it.” -- Ranganatha (19), autorickshaw driver
“AIDS is spread by ‘secondhand women’.” -- Mukesh (25), laundryman
Shivamma, Ranganatha and Mukesh are just three of the many people I met while seeking to assess levels of awareness on HIV/AIDS among the general public. I chose as my subjects people (from both urban and rural Karnataka) who belonged to lower economic groups and were either illiterate or semi-literate.
My objective was to find out how deeply awareness-generation efforts by various national and international agencies had penetrated to this section of society. My questions were very basic, and, realising early on that awareness about HIV was non-existent, I limited myself to asking about AIDS.
I did expect lower levels of awareness among the people I spoke to, as low literacy among these groups severely limits their ability to access reliable information. But what I also encountered was a morass of confusion, misconceptions, and a strong imagery that associated AIDS with ‘bad women’, mosquitoes and barbers’ blades.
In Karnataka, which has the third largest incidence of HIV-positive people in the country, huge amounts of money are spent every year on Information, Education and Communication (IEC) activities. Over the last four years, the Karnataka State AIDS Prevention Society (KSAPS) alone spent Rs 647 lakh on IEC. Other national and international agencies have been working simultaneously to spread awareness on HIV/AIDS; they collectively spent indeterminate amounts on this. (A recent sentinel survey indicates that the prevalence rate of HIV in the general population is 1.52%. The total population of Karnataka is 52.9 million. By this calculation, Karnataka is estimated to have 5 lakh HIV-positive people according to KSAPS figures.
As G B Meti, Deputy Director (IEC), KSAPS, says: “We have evidence to show that the infection is not restricted to specific groups (like sex workers and truckers) anymore, and our effort has been to spread awareness on HIV/AIDS among the general population.”
But have these efforts worked? Does the general population, particularly the very poor, illiterate and the marginalised, possess accurate information on HIV/AIDS and its various dimensions?
Attempts to carry out a reality check on this in urban as well as rural areas produced interesting, but worrying results. While there was a modicum of awareness about AIDS among the semi-literate, awareness was almost non-existent among the illiterate.
Most of the men I questioned had heard about AIDS, but there were many women who were completely unaware of the disease. There was absolutely no awareness about HIV. Safe sex was an alien concept even though many of the men I questioned admitted to having more than one partner; awareness about condoms as a means of preventing HIV was woefully inadequate. Some responses I got were:
- Renukamba (30), wife of the watchman at a construction site and mother of three children below the age of 10, looked at me blankly when I asked her if she had heard of AIDS and said: “I don’t know what you are talking about.”
- “AIDS gets into the blood when we get bitten by dotted mosquitoes,” Katamaiya, a pourakarmika (corporation sweeper), stated firmly.
- Lakshmi (25), a housemaid, said: “I know about AIDS. It is a bad and dreadful disease. But if I speak about it without asking my husband, he will say I am characterless and must be doing bad things.” I did not get any more information out of her.
- Ganesh (22) firmly believed that only women could spread AIDS. I asked him: “What if you got it from a woman and gave it to another?” He had no answer. He also believed that he could get AIDS from sitting on bedclothes that an infected person had used.
- Muniyamma is of indeterminate age and earns a living selling flowers. She had heard of AIDS but not HIV, and angrily refused to talk about it saying: “I don’t want to discuss AIDS. My sister’s son died of it. He was a bad boy. I am not interested in knowing anything more about that dreadful disease.”
- Chandra (35) knew about AIDS, had lost a brother recently to it, and said: “The only ways you can get AIDS is by associating with ‘footpath women’, through barber shops, and mosquitoes.” He was quite unabashed, revealing that his brother visited these women everyday and contracted AIDS from them.
- I visited the Primary Health Centre (PHC) in Ashoka Nagar, in Khanapur taluka, barely 40 km from Belgaum, to talk to rural groups, both men and women.They were largely unaware of the condition, and even the few who had heard of it only knew that AIDS was a killer disease and associated with bad character. Kalavva also struck a note of apathy when she said: “So many of us are already dying of TB, malaria, and other illnesses. What difference will it make to anyone if we die of AIDS?”
- Sambhaji (35) owns a petty shop in Khanapur, near the highway. I asked him if he stocked condoms. He looked innocently at me and revealed that he sold three or four condoms a month to lorry drivers who used them to repair leaky diesel pipes. Laxman Chougule, a lorry driver who was sitting with him, endorsed the statement and said he had no other use for condoms.
- I met young, sexually active slumdwellers in Belgaum city who freely admitted to having had sex outside of marriage. They giggled self-consciously when asked about safe sex. “We use ‘helmets’ (the colloquial term for condoms) sometimes when we go to other women, but not with our wives.”
- And yet, when I visited a sex worker’s home in the Khasbagh area of Belgaum, Lakshmi, the lady in charge, had complete knowledge about the need for, and the use of condoms. Fear of the men who stood outside her door poised to handle trouble even before it started prevented me from asking her if she was able to enforce the use of condoms on her clients.
- The wives of men who admitted to having multiple partners naively asked: “We are faithful; what if our husbands are not? Will we get AIDS?
It’s been 20 years -- two decades -- since the first case of HIV in India was detected in Chennai. Twenty years in which we have had time to tackle the problem, but have actually allowed the infection to touch more than 5.2 million people, with the figures climbing every day. Twenty years, the majority of which have gone in believing that only sex workers, truck drivers and homosexuals can become infected. Twenty years in which we have subjected the HIV-infected to stigma and discrimination. Above all, 20 years spent largely in denial, in the belief that our culture and values will protect us from HIV.
Let’s look at what we have finally woken up to. We have at last been forced to face the fact that HIV does not discriminate between sex, class, or caste. It can and has actually become a reality for you, our neighbour, and me.
“It is estimated that more than 25,000 people will require treatment with ART (antiretroviral therapy -- medication given to HIV-positive people when the CD4 count in their blood falls to below 200) in the coming years in Karnataka, according to KSAPS, Bangalore. At a conservative estimate of Rs 8,000 per person per year, it will place an enormous burden on the exchequer, as the government is committed to providing free ART for all those who need it. This will be a long-term commitment, as ART, once begun, cannot be discontinued,” says Meti.
“The crux of our fight against the spread of HIV lies in how effectively we can promote prevention, the only tool we have against HIV. We have to get correct information out on time, and to everybody, not just the literate. We cannot ignore the fact that the construction worker, the carpenter, the pourakarmika, the plumber, electrician and truckdriver are just as vital to our economy as white-collar workers. Their health needs therefore are just as important,” says P R Dasgupta, IAS (Retd), first Project Director (1992-95), NACO, New Delhi.
A task that seems easier on paper than it is on the ground. As Meti observes: “There are severe constraints while mainstreaming communication on HIV/AIDS. Taking messages right down to the grassroots level and changing behaviour patterns that have been established over years require intensive efforts at the community level. Unless there is convergence and integration between the KSAPS and other departments like health, women and child welfare, education, the police, gram panchayats and village-level organisations, awareness cannot percolate effectively down to the general population. But we are working in this direction.”
The challenge is huge, and reaching out to people at the grassroots level effectively is never easy. Dr Prashanth N S, Coordinator, Health, Karuna Trust, a Bangalore-based NGO that runs 25 PHCs across Karnataka in a public-private partnership with the Karnataka government, says: “It is probably time to go back to the drawing board and devise creative and innovative measures to achieve large-scale awareness, both in urban and rural areas. It might be time now to think of placing one health worker in each primary health centre dedicated to spreading awareness on HIV/AIDS in rural areas… In Karnataka, for instance, there are 1,683 PHCs. If we were to look at sheer economics, it makes more sense to place health workers trained to impart awareness on HIV/AIDS in each centre to work on prevention on a war footing. This would work out infinitely more cost-effective than providing care and support to people who could have avoided the problem in the first place.”
Dasgupta, however, sounds a note of caution. “Awareness-generation among rural and urban illiterate and semi-literate groups has to be an interpersonal exercise, and messaging has to be group-specific. Undoubtedly PHCs are a good way to reach the community, at least in rural areas. Dedicated peer educators who enjoy good rapport with the community can play a vital role in these efforts,” he says. “But in light of the negative perceptions associated with government health infrastructure, we need to exercise caution and attempt to initially spread awareness only through PHCs that stand out for their good performance. We also need to provide basic amenities to health workers in order to sustain the motivation to work among them.”
It is evident that we have a long way to go before we are able to demystify HIV/AIDS. But our efforts have to be intensified, and without further delay. Future messaging should focus strongly on the fact that anybody can get HIV, and we are all as capable of spreading it as the ‘secondhand woman’, or the ‘footpath woman’.
Eventually, there are some non-negotiable factors that could stem the spread of HIV/AIDS. Among these are complete and accurate information among the general population, responsible behaviour on the part of men, and empowered women who can, and must, enforce the use of condoms.
(This story was made possible by a financial grant from The EU-India Media Initiative on HIV/AIDS, implemented by The Thomson Foundation. Bharathi Ghanashyam is with Communication for Development and Learning, Bangalore)
InfoChange News & Features, May 2007