Life is a struggle for many Indians. But a child who is HIV-positive, has full-blown AIDS or whose parents died of AIDS, is unable to defend himself or herself against the social prejudices, fear, and cruelty that exist due to the lack of awareness and the social taboo that surround the words “HIV/AIDS” in India. Have you ever wondered what happens to these children? Manorama Pinagapany did and decided to do something about it.

Mahatma Gandhi once said, “You must be the change you wish to see in the world.” It appears Manorama decided to follow it to the letter. A doctor by profession, Manorama was the assistant surgeon in the Pediatric Gastroenterology Department at the Institute of Child Health—a hospital for children in Tamil Nadu, the Indian state which recorded the first AIDS patient in India. In 1993, two orphans were admitted because they had hepatitis B and also tested positive for HIV.

Once the two children were known to have HIV, the orphanage which was caring for them didn’t want them back. When the other doctors hesitated to treat the children, Dr. Manorama became angry. She says, “I decided to rear both these children because they were discriminated against so badly.” After six months, she quit her job to take care of the children full-time. At her friend’s suggestion, she formed an NGO to take care of not just these two children but other children who are discriminated against or don’t receive proper healthcare because they either tested positive for HIV or were AIDS orphans. She called her organization CHES (Community Health Education Society). Seeing the children get better with the tender loving care she showered on them, CHES got more referrals and over twenty children in the first year itself.

With the increasing number of children, Manorama couldn’t manage to attend to all twenty children. Hiring others to take care of the children was not an option as CHES was not funded at that time. So she came up with an innovative idea. Dr. Manorama says, “We took in women who were HIV-positive, destitute, and thrown out of families. We made both ends meet. The woman was offered shelter and food and in return we wanted her to take care of the children. This worked well.”

Born in Chennai, the younger of two children, Manorama became interested in medicine at the tender age of six. According to her, “When I was in the second standard, my father showed me a front-page newspaper clipping of a doctor from Madurai called Manorama who got first class in M.B.B.S., which was rare for those days. He also told me the story of Florence Nightingale. Both of these inspired me to do medicine.” Unlike many children who give up their dreams as they get older, Manorama persisted and became a doctor. Today she is Dr. Manorama, MD, DCH, DM (Gastro).

She chose to give up her lucrative practice as a pediatric surgeon to take care of socially stigmatized children who didn’t receive proper medical care. Why? Because the medical profession is all about saving lives and community service to others, mainly to those who are sick and dying. “The best aspect about my job is when I bring back a life from [their] deathbed and provide quality of life till he/she dies—a death with less pain and suffering and with dignity,” says Dr. Manorama.

However, Manorama Pinagapany was not satisfied with just helping children. Some of the HIV-positive women she hired to take care of the children turned out to be sex workers. They told her about how they had contracted HIV due to low condom usage by their male clients as the men refused to wear them. She was irked by this as she realized working hard on helping the affected was not enough. The creation of awareness was more important—it could lead to prevention. 

So CHES began to conduct mass awareness programs in Tamil Nadu to increase awareness about high-risk behavior. They roped in film celebrities for programs that combined entertainment with AIDS awareness in both rural and urban areas. In between the songs and dances, they talked about sexual transmission of HIV. This sort of campaign was unique and the response was tremendous. “After the program, we had a lot of men asking whether they needed testing. We [hooked] up with Government General Hospital for counseling and got many of our staff trained as counselors through the famous Christian Medical College, Vellore.”

As more people came forward for testing, the number of people infected began to grow and CHES soon started a home-based care program for children and their parents in the community besides the orphans’ care program in Chennai in 1997. From then, Manorama has expanded the prevention program as well as the HIV care program, thanks to partial funding from Family Health International and private donations. However, getting funding for orphans with AIDS is still a major challenge she says because, according to her, many ask, “These children will die soon—why should we spend [money] on them regularly?” So she came up with innovative ways of raising funds like “A Donor A Day,” where people can donate small amounts of money on their birthday, wedding anniversary, Independence Day, Festival celebrations like Holi, Ramzan, Christmas, and New Year’s. 

Today, CHES not only takes care of over 500 children who are HIV-positive and over 680 families in their orphan-care and home-care programs but is managing to put up the kids for adoption. Dr. Manorama says, “As we started to grow, I realized that children were longing for a family more and more. It was my dream to put these children back into the community in some way or another.” So CHES began to look into foster care and AIDS sensitization. They invited community members who wished to adopt children to visit the orphan shelter. Those who visited the home realized the pain and sorrow the children were going through. The way children rushed to them longing for love moved them. Manorama says, “One woman came first to take a child, then came the second, and soon we had twenty-two families willing to take children. We were slow, waited for them to drop out in case they had made a hasty decision, but they stayed [committed to the adoptions].”

However, CHES has a strict screening procedure to ensure that the children won’t be mistreated or abused after adoption. So people from CHES went to inquire about the families, met with them every day to test their AIDS awareness, counseled the would-be foster parents, and so on. In the first adoptions of their kind in India, CHES successfully let three HIV-positive children be adopted. Worried that these foster parents might not be able to handle an addition to their families, CHES visits every third day to make sure the adopted children are being cared for properly. Processing is going on for the other nineteen families seeking to adopt.

At CHES, children, eighty percent of whom are HIV-positive, are provided a safe space to live in, given routine medical care, and treatment for opportunistic infections. All the children are provided education, of which eight children studying above 4th class are going to regular school after the school authorities were informed. Besides love and care, all children are provided recreation, picnics, free medical treatment, and specialized counseling. They also go through life-skills education sessions to meet the challenges in this world and are encouraged to discuss AIDS and their anxieties.

Dr. Manorama says her work isn’t over yet. She hopes to get enough funding to provide expensive antiretroviral therapy to all her children as this would help increase their life spans considerably and to boost AIDS awareness among the masses through a slew of programs starting with the school level. Unfazed by challenges, Manorama Pinagapany is determinedly moving toward her goal.

For more information, contact the organization by mail: Attn: Dr. Manorama Pinagapany, CHES, 198 Rangarajapuram Main Road, Kodambakkam, Chennai 600 024, Tamil Nadu, India; or by phone (dialing from the U.S.): (011) 91-44-24731283 or (011) 91-44-24726655.

Deepa Kandaswamy is a writer and columnist based in India. Her credits include ABC News, Middle East Policy, The Christian Science Monitor, The Hindu, Islam Online (Egypt), and Jewish Frontier, among others. Her article “Talibanism in Technology” published by Data Quest (India) was voted the best nonfiction article of 2003 by readers around the globe in the Preditor’s and Editor’s Reader’s Poll and nominated for the UN Media Award in 2003.