An Indian AIDS service organization shows that a meaningful coalescence of care and prevention can be a cutting-edge strategy for curtailing further spread of HIV.
IMPACT ON HIV, Volume 1, No. 1, October 1998
A nondescript building looms over a sleepy lane in Kodambakkam, the throbbing heart of Chennai (formerly Madras), the capital city of India's southern state of Tamil Nadu. Inside, muted light from a curtained window spills over a group of children, aged 2 to 9 years, sleeping peacefully together on straw mats spread on the floor. In a room nearby, an HIV/AIDS education session is in progress, with people speaking in hushed tones so as not to awaken the children. Downstairs, a nurse gently feeds an HIV-positive woman who is too weak to feed herself. And so begins another day at the hospital that houses the Community Health Education Society (CHES), a nongovernmental AIDS service organization.
The brainchild of Dr. Manorama Pinagapany, a pediatric gastroenterologist, CHES came into being in 1993, the HIV/AIDS epidemic was largely invisible in Tamil Nadu.
"I was working at the Institute of Child Health when two children from a local orphanage were brought to us with severe jaundice,"relates Dr. Pinagapany. Krishnaveni, the girl, was 5 years old and Ravi, the little boy, was barely 3. The children had been tested for HIV by the orphanage and found antibody positive. "Over a period of time they became the darlings of the ward. Unfortunately, the orphanage did not want them back after they recovered. They had no place to go, and I, who had come to grow very fond of them, simply decided to take them home."
The entry of the two AIDS orphans into Dr. Pinagapany's life led to CHES's initial project, the Ashram (hermitage), a full-fledged shelter for people living with HIV/AIDS. CHES's primary aim was to provide care for AIDS orphans, regardless of their HIV status. To learn how to do this better, Dr. Pinagapany received informal training at the state-run Government General Hospital in Chennai.
Over time, the doctors at the General Hospital began referring destitute children and HIV-positive women to CHES. Many of the women had been abused, and some had been sold into the sex trade.
"The women required more than food and shelter," Dr. Pinagapany said. "They needed an emotional outlet of some kind. As the orphan children at CHES needed love and physical attention, it seemed only natural to connect these two groups to fulfill each other's needs."
The Ashram also serves as a temporary shelter for women and their children who have become destitute because of their HIV- positive status. It has had 69 admissions to date, from Mumbai (formerly Bombay), Calcutta and other parts of Tamil Nadu as well as Chennai. The care Ashram residents receive includes spiritual counseling and educational support. Older members who are illiterate are taught to read and write.
Up every morning at 7, the Ashram children meet the day with an energetic two-lap jog around the hospital compound, enthusiastically jostling each other in a bid to finish first. Twice a week Valavan, a student volunteer, patiently teaches the children yoga, which they have come to love. Following a simple breakfast of idlies (steamed cakes of rice flour), they settle down to learn to read and write the English, Tamil and Hindi alphabets till lunchtime. Vijaya, a CHES worker, also teaches them simple mathematics, craft work and singing.
"They are very endearing and this never fails to evoke a response from us workers or visitors," says Geetha, a sex worker who left the sex trade to work with CHES full time. "Early in the project, a friend of mine who had looked after the children for a long time suddenly decided she would leave us, and the effect on the children was devastating. They had grown to love her so, and it took them days to recover their sense of security.
"What I earn here is not comparable to what I could earn in the sex trade," Geetha added. "But I feel wanted and respected and feel I am part of a family. I cannot buy that with money, can I?"
By September 1995 CHES had eight women and four orphaned children under its wing, most of whom were HIV-positive. The space to house them was provided free of charge by Raasi Hospital, a private hospital owned and run by Dr. Pinagapany. Institutional and outpatient care and counseling services were also wholly funded by the hospital, while relatives and well wishers donated food and clothing.
Gradually, the NGO realized that it could no longer sustain its work through gifts and donations. However, obtaining the requisite funding to run a shelter for AIDS orphans and HIV-positive women proved next to impossible. "Funding shelters, hospices or institutional care for people living with HIV hardly figured on the list of the donors' priorities," Dr. Pinagapany said. "We were advised to submit proposals for HIV prevention projects instead."
In September 1995, CHES received a one-year grant from the Tamil Nadu State AIDS Control Society for an intervention with female sex workers. Weeks of painstaking work with a few friendly brokers and sex workers helped the CHES staff understand the structure of the sex circuits in the coastal areas of South Chennai that were chosen for the project, named Thozhi (companion).
Interestingly, Thozhi did not start with HIV education. Again, care was offered first. Brokers and women in the sex circuits began to invite their contacts to the hospital for free medical help. There was no mention of venereal disease or AIDS. Once the women underwent a checkup and relaxed to a point where they could share their health concerns, the subject of HIV and other sexually transmitted infections (STIs) automatically came up.
As the women began attending the hospital regularly to obtain treatment for various problems, mostly STIs, they learned how to use condoms. Those who were interested were trained as peer educators and condom suppliers.
But they learned their most valuable lessons while nursing some of the Ashram's residents who were dying of HIV-related illnesses. AIDS was no longer an abstract intangible, but a friend, a colleague or a relative.
Siva, a sex broker who began by bringing his employees and their friends to the hospital for free medical care, is now a full-time CHES worker. "I did not think I would stay on, but I have," he said.
His change of heart came when Siva was entrusted with the task of nursing 27-year-old Veni, a sex worker from the neighboring state of Andhra Pradesh. Veni was bedridden due to weight loss, had herpes zoster (shingles) and could not speak. "I used to talk to her every day and she would seem to understand," Siva said. "She would refuse food and eat only if I fed her.
"Her death affected me greatly," he continued. "I have risked getting HIV-infected hundreds of times in the course of my job but have been spared. But what about the innumerable girls I procured for the profession?"
Condom use in the project area increased to 63 percent in October 1997 from a baseline of 7 percent two years earlier. During 1997 alone, Thozhi reached some 700 new entrants to sex work, 150 brokers and 2,400 clients, and peer educators distributed 288,150 free condoms. The project also improved its STI care facility with financial support from the U.S. Agency for International Development's (USAID's) AIDS Prevention and Control (APAC) Project through the NGO Voluntary Health Services.
Dusk had already fallen over the narrow paths dissecting the slums into myriad patches of tiny houses when CHES field workers Raju and Muthupandian swung into action. Watched by a straggly group of adolescent boys, Raju spread a large blanket on the mud path to demarcate the dance floor. As the lyrics about AIDS set to hit film tunes pulsed out from a tape recorder, a crowd of mostly teenage boys and men collected. Male dancers from CHES's student volunteer corps, each made up to impersonate a popular film star, began dancing, accompanied by much cheering and clapping from the audience.
Between the dances, Muthupandian seized the mike to talk to the audience about STIs and HIV/AIDS, and a boisterous interaction followed. "What are the ways you can protect yourself from AIDS?" he yelled, and was answered correctly by a chorus of voices. The show usually ends with a quiz on AIDS. Prizes are handed out to the winners, and they are invited to come to CHES for further information.
Those who accept this invitation -- and many do -- receive counseling on safer sex and condom use and are trained as peer educators for Project Velicham (light). CHES developed this project for men with funding from the Tamil Nadu State AIDS Society following complaints from the sex workers that they were often forced to agree to unprotected sex because clients refused to use condoms. Velicham staff have staged over 300 such programs in the slums and reached an estimated 40,000 people along the coastal areas of South Chennai.
After reading newspaper reports that CHES was taking in people living with HIV/AIDS, a family of four from a remote district in Tamil Nadu arrived at the NGO's doorstep in early 1995. They had fled their village, following a relative's attempt to poison them.
Raghu, his wife Mala and their elder son, barely aged 3, were HIV-positive. Their 2-year-old son was uninfected. "Mala, who was found to have genital warts during a routine antenatal checkup, was tested for HIV first," says Dr. Venkateshwar K. Rammohan Rao, CHES medical officer. "We counseled them and gave Raghu the job of office assistant. Mala was extremely depressed, and we got help from psychotherapists from the Institute of Mental Health to help her handle her feelings better."
The couple's relatives visited regularly and were counseled by CHES. After a year, their families wanted the couple and their children back home.
"They saw us eating and working with them every day and realized that their fears of contagion on casual contact were baseless," says Dr. Pinagapany. "For them, seeing was believing."
The family subsequently visited CHES twice for checkups. Raghu got a job selling cloth in Wyzag, a coastal town. Mala began to neglect her health and eventually succumbed to tuberculosis. In a letter to the CHES staff, she wrote that she would not forget CHES until her last breath.
When they received news of Mala's death, two CHES workers, Siva and Vetri, went to her village to attend the funeral. Although relatives were at the funeral in large numbers, nobody wanted to be a pallbearer. It was only when Siva and Vetri started performing the last rites without hesitation that other family members followed suit.
A few months later, Mala and Raghu's elder child was readmitted to CHES's Ashram with HIV-related symptoms and died. Raghu's elder brother, also HIV-positive, died recently. This brother's HIV-positive wife lives with her two children, who are uninfected. Raghu's widowed sister also lives alone, looking after his second son. Only Raghu's younger brother is uninfected, and CHES is trying to help arrange his marriage to a female relative so that this couple can look after all the imminent orphans in their family.
"When you care for the emotionally or physically abused, it is difficult to remain a dispassionate service provider," Dr. Pinagapany said. "We foster strong emotional ties between everyone here because it can make a qualitative difference to the depth to which a carer can recognize and fulfill another's needs."
A home-based care project developed by CHES in September 1997, funded by the Tamil Nadu State AIDS Control Society, reaches about 120 people living with HIV/AIDS. The number of those who are too ill to come to the hospital is slowly increasing.
Staff and volunteers from all the CHES projects provide psychosocial support, medical advice and care in the homes of HIV-positive people. This helps prevent the onset of HIV-related symptoms and reduces the number of inpatient visits. Another 120 who live outside Chennai are visited periodically. Named Vidiyal (dawn), the project also conducts classes on yoga and meditation with help from the Chennai-based Bihar School of Yoga.
Vidiyal runs a "Hope Club," where HIV-positive people meet monthly to exchange experiences and learn about healthy living. At each meeting, the Hope Club provides a talk and a screening by a medical specialist, such as a neurologist or chest specialist.
Among CHES's more notable efforts has been a beauty contest for transsexuals, organized with guidance from the APAC Project. This unusual event, which drew widespread media attention, succeeded in promoting community acceptance of transsexuals as well as raising their own awareness and getting them involved in HIV/AIDS prevention.
"We wanted people to realize that alis (transsexuals) are as much a part of society as anyone else," Dr. Pinagapany explained.
CHES helped develop a self-help group for transsexuals, which will be registered as a society to enable them to improve their welfare and fight for their rights. As a positive step in this direction, CHES played a major role in convincing the collectorate of Villupuram, the traditional seat of the transsexuals' religious festivals, to allot plots of land to members of this community. Houses will be constructed on 46 plots with financial help from the Rotary clubs in the area. CHES also plans to help establish income-generating activities such as poultry farming to reduce the likelihood that transsexuals will resort to sex work.
Working with people who have been rejected by society, such as transsexuals and women and men in the sex industry, can be controversial. But unlike most Indian NGOs that help sex workers, CHES has been able to avoid the problem of police harassment. Speaking to police inspectors in the project areas before interventions began and offering education programs for police helped enlist their full cooperation.
CHES does not try to convince women or their brokers to leave the sex industry, but it has been able to offer a few alternatives. Some of the women take turns using a donated sewing machine that is kept in the CHES office. "I can make about 700 to 800 rupees a month by sewing blouses," one woman explained. "That way I can cut five or six clients and reduce my HIV risk."
The NGO itself employs 25 sex workers and five sex brokers as full or part-time peer educators. HIV-positive people are trained in counseling to help them find jobs as counselors with other nongovernmental organizations.
Care and Prevention
In order to deal with the diverse needs of its extended family, CHES has woven a web of symbiotic relationships with organizations that have skills different from its own. For example, CHES links its drug users to the T.T. Krishnamachari Hospital, a clinic specializing in detoxification programs. In turn, T.T.K Hospital obtains HIV counseling services from CHES. For HIV testing, CHES uses the testing facilities provided on payment by YRG Care, an AIDS service organization. Destitute HIV-positive women are referred to CHES by an NGO, The Banyan, that cares for destitute women, and positive women who do not need institutional medical care at CHES are referred to The Banyan. For spiritual counseling, CHES turns to a variety of Christian, Muslim and Hindu religious organizations.
The imaginary line between prevention and care is blurred at every level in each of CHES's projects, whether it be the shelter for people living with HIV, the sex worker and client interventions, or the home-based care project. Each is an organic response to the growing needs of the other. Women from Thozhi look after the children in the Ashram. Brokers and clients from Velicham provide home-based care, including prevention counseling, for HIV-positive people. And Vidiyal's HIV-positive members serve as counselors in all the projects.
"The fact that some of us have HIV and some do not, does not preoccupy us," Siva said. "We feel like a family despite such minor differences because each of us understands what it feels like to be rejected, hunted or hurt by society."
Finding funding for CHES's work remains a challenge. The NGO has no funding for its Ashram, and condom supplies cannot keep pace with the demand created by CHES projects. Local schools will not admit the children of the Ashram, and CHES does not yet have the resources to run its own school.
Despite these obstacles, Dr. Pinagapany refuses to change her approach. "Fragmenting one's work along the clichéd lines of an AIDS proposal in order to connect to a funder's mindset may prove detrimental to the spontaneity and effectiveness of one's work," she said.
In many ways, CHES has transcended the thinking that sees care as being distinct from prevention and places it at the final stage of the spectrum in the response to HIV/AIDS. Instead of first increasing awareness of HIV -- in other words, telling people that they have a problem -- CHES goes to them with a solution: free medical care. CHES puts people ahead of project goals, say staff and clients, and the result is greater self-esteem, trust and openness to HIV prevention messages among those who need them most.
-- Jaya Shreedhar
Jaya Shreedhar, B.Med., is a health communication specialist who uses her medical training to make health issues and communications accessible and comprehensible to the lay public. She is currently a technical advisor to Flame Advertising Company and a temporary advisor to the Department of Policy, Strategy and Research of the Joint United Nations AIDS Programme on HIV/AIDS (UNAIDS).