In the summer of 1998, the people of the city of Chennai witnessed one of the goriest human rights violations ever perpetrated against a person living with HIV in India. A man believed to be HIV-positive and rumored to be attempting to inject people with HIV-infected blood was burned alive in broad daylight by a mob.

The state health department and local AIDS service organizations (ASOs) could do little to counter the ensuing tide of confusion about how HIV is transmitted and the heightened fear and distrust of HIV-positive people. To Indians living with HIV/AIDS -- the small minority who know their HIV status out of the more than 4 million people estimated to be infected -- this reaction was a sobering reminder of their extreme isolation and vulnerability.

"Although stigmatization and differential treatment were not new to us, the sheer brutal physicality of this episode suddenly made us realize how oppressive our environment is -- and how fragile our existence," said 31-year-old Ashok Pillai, president of the Indian Network of People Living with HIV (INP+).

The network's members responded to the incident by visiting the area the next day. Traversing the neighborhood where the man had been burned to death, they addressed the residents in small groups, condemning the incident and answering questions about how HIV is transmitted and how it is not. They also pointed out that there was no proof that the victim of the burning was infected with HIV or was infecting members of the public.

"When we told them that we were HIV-positive and that we wanted to allay their fears about us as a community, they were extremely receptive and hospitable," recollects Rama Pandian, former project coordinator of INP+.

INP+ members also gave a radio interview and issued a press release that was published by the local papers. "The misinformation and mistrust surrounding HIV-positive people are enormous," said Pillai. "We need to clear the air, and none can do that better than ourselves."

Stigma and Discrimination

Tucked securely into a quiet lane in the West Mambalam area of Chennai, the compact three-room office of INP+ hums busily with an energy born of the dedication of its occupants. Founded in 1997, INP+ is the largest network of people living with HIV in India, with a 350-strong membership spanning the length and breadth of the country. Together with its sister networks in several Indian states, INP+ is in touch with over a thousand people living with HIV throughout India.

The network's relevance cannot be overemphasized. Although incidents like the Chennai burning are rare, stigma and discrimination against people living with HIV/AIDS are widespread in India. A study carried out during 1998 in the cities of Mumbai and Bangalore, for example, revealed that such discrimination was most common in the health sector. People living with HIV were often directly or indirectly refused hospital admission and care. When treatment was given, its quality was poor in government-run and private hospitals alike.

The study found that many patients -- particularly women -- were tested for HIV without their consent. The purpose of such testing was usually to protect hospital staff because universal safety precautions were lacking, rather than to improve the patient's lot through counseling or care. Pregnant women were forced to take an HIV test, and those testing positive were denied antenatal care and advised to terminate the pregnancy with no counseling about available options.

The researchers concluded that the privacy of people living with HIV was rarely respected in healthcare settings or workplaces. The considerable anxiety this lack of respect causes often makes HIV-positive people avoid healthcare or employment, thus jeopardizing their lives.1

An INP+ study conducted in several other cities to assess the needs of people living with HIV revealed that these problems are not limited to Mumbai and Bangalore. "People living with HIV who seek counseling and information from our sister networks in various parts of the country report similar experiences," Pillai said.

Coming Together

Pillai's earliest experience of self-help activities came when he was given brochures about HIV/AIDS by Dhirendra Singh Rawat, an HIV-positive person from Poona, Maharashtra, who had founded an NGO called the Association for People Living with AIDS (APWA).

"After being discharged from the Navy on medical grounds in 1994, I felt I had nowhere to turn," Pillai said. "The need to share my thoughts and educate myself about HIV impelled me to correspond regularly with APWA members."

In the beginning, the scope of work of groups such as APWA was limited to self-help.

"Due to the scarcity of basic services such as counseling, we realized that self-reliance was our only option, although we lacked the skills and information required," Pillai explained.

At that time, networking among the self-help groups was minimal. As human rights violations against people with HIV in India became more frequent, however, this began to change.

An APWA-sponsored meeting held in Poona in August 1996 proved cathartic for many people with HIV from different Indian states. Participants decried governmental and NGO apathy, discrimination in the workplace or at the hands of health providers, and negative portrayals of HIV-positive people in the media. The meeting culminated with the consensus that what was required was a national forum for people living with HIV in India.

In February 1997, with financial and technical support from Family Health International (FHI), 12 HIV-positive individuals from different states of India came together under a single umbrella organization, which they called the Indian Network of People Living with HIV. The 12 founding members planned to organize and strengthen the emerging networks of positive people in their states and link them into a national network.

Pillai, who was elected general secretary of the organization at its first meeting, remembers that the participation of representatives from FHI, the Joint United Nations Programme on HIV/AIDS (UNAIDS), NACO and the Tamil Nadu State AIDS Control Society (TNSACS) in that meeting was important to INP+ members. "Their supportive presence underlined the fact that we, the people living with HIV, needed to push our insecurities aside and help them to help us," he said.

Reaching Out

Since then, INP+ has grown into a national network that is increasingly recognized as a valuable resource locally, nationally and internationally. A networking project supported by FHI from October 1997 to August 1998 helped the original members of INP+ expand its membership. The success of these efforts was demonstrated at the network's first annual meeting, where more than 85 of its 350 members came from 11 of India's 25 states to participate.

Today INP+ has seven state-level "sister" networks: the Tamil Nadu Network of Positive People (TNP+), the Maharashtra Network of Positive People (MNP+), the Goa Community for Positive People (GCP+), the Council of People Living with HIV/AIDS in Kerala and Lakshadweep (CPK+), the Karnataka Network for People Living with HIV/AIDS (KNP+), the Pondicherry Network of Positive People (PNP+) and Manipur Network of Positive People (MNP+). To INP+, these networks are important partners who work independently at the grassroots level in their respective states.

As the network has grown, so has its influence. In September 1997, for example, the National AIDS Control Organization invited the INP+ president to participate in a policy-level meeting to draft a national AIDS program. The network's project coordinator represented INP+ at the resource planning workshops for the second phase of the HIV/AIDS projects in Manipur and West Bengal states, and an INP+ member now sits on the executive committee that is the decision-making body of the Tamil Nadu State AIDS Control Society.

INP+ also receives many invitations for its members to serve as resource persons and speakers at local, national and international workshops and conferences. By participating in these meetings, members have been able to reach key audiences such as healthcare providers, government officials, NGO personnel, journalists, lawyers and corporate leaders.

One such meeting, a NACO workshop for physicians and respected AIDS service organizations from all over the country in January 1998, presented an exciting opportunity for INP+ to expand its advocacy efforts. "While it was a matter of pride to achieve acceptance as a national organization, it was with mixed feelings that we traveled to the workshop," Pillai remembered.

"We were about to face a group that had the potential to vastly improve the way HIV-positive people were treated in India! Understandably enough, I became very emotional while relating the difficulties we faced. It was our first real opportunity to voice our concerns to officials from the health ministry, NGO representatives and doctors."

In his speech, Pillai told the audience that the focus of HIV prevention efforts in the country was confined to the vast majority of the population who were uninfected. Hardly any efforts were being made to educate, counsel or care for those living with HIV or to involve them in prevention efforts. "I said that unless people living with HIV are visible, there will not be any behavior change and the infection will continue to spread, " Pillai recalled.

Under projects sponsored by FHI and Project Concern International (U.S.), INP+ continued to target government, NGO and medical personnel, as well as media representatives, in its advocacy efforts. Beginning with Tamil Nadu and Kerala, INP+ members collected information about the different groups and developed a strategy for approaching them and raising their awareness of the problems facing people living with HIV/AIDS.

"We found it far more useful to build personal relationships with people rather than merely issuing press releases or making formal presentations at our workshops," said Geetha Venugopal, an INP+ volunteer.

As an example, she cited an INP+ workshop held in Cochin, which attracted members of the press, NGO representatives and key policymakers. "We spoke individually to each participant, and it was these one-on-one discussions that had very inspiring outcomes," Venugopal said. "For example, a key health official in Kerala's AIDS control program became convinced to discard messages that stigmatized people living with HIV and entered into an informal working relationship, where we lend our experiences and expertise."

Another opportunity that helped raise INP+'s profile came in February 1998, when an INP+ member was asked to speak at a media workshop organized by UNAIDS, NACO and TNSACS for media representatives from India's southern region, including journalists from Mumbai. Some of the journalists who participated in the workshop kept in touch with INP+, and the group was able to help them arrange several interviews with people living with HIV/AIDS. Both the workshop and the interviews resulted in positive media coverage.

INP+ members continue to speak to journalists and have been interviewed for articles in several national magazines, including Health and Nutrition and Gentleman, and many local and state newsmagazines and newspapers. Nearly every month, members accept invitations from the All India Radio, Chennai, to speak about living with HIV/AIDS on programs that enjoy a statewide listenership.

Whenever they speak to journalists or healthcare providers and others who provide HIV/AIDS services, INP+ members emphasize the importance of quality counseling before and after HIV testing. As a result, a growing number of people are being referred to INP+ and its state-level networks for support once they decide to get tested.

Supporting Positive Living

Advocacy efforts helped INP+ members identify where they could refer people living with HIV/AIDS for services such as temporary shelter, legal assistance and treatment for sexually transmitted and opportunistic infections.

The most sought-after service is medical care. So far INP+ has identified 20 physicians in different states who are willing to treat HIV-positive people.

It is a number INP+ members hope to increase. "We fervently hope that these who ensure a good standard of care and are committed to the cause of AIDS prevention and care will likewise inspire their colleagues," Pillai said.

In 1997, with a grant from the TNSACS, INP+ began an HIV/AIDS telephone hotline from its secretariat in Chennai. The project hoped to offer succor to callers by providing information on HIV/AIDS and STIs, life after HIV, pretest counseling and referrals.

"Certainly information is the first step towards empowerment, and counseling is a part of finding solutions," Pillai said. "When this is done by people living with HIV through the sharing of our own experiences, it has considerable impact."

Callers were also encouraged to come directly to INP+ for help. The yearlong project started slowly, with only two or three telephone callers each week. Advertising in a local newspaper helped increase the number of inquiries to over 60 a week. Once the advertising slacked off, however, so did the response.

Self-help is still the foundation of INP+'s work. People living with HIV/AIDS are invited to attend support group meetings at the secretariat's office once a month. The number of people attending the meetings increased from nearly 20 in mid-1998 to between 25 to 30 in April 2000.

At the support group meetings, participants discuss a wide range of issues that concern people living with HIV. "Encouraged by INP+ counselors, they gradually lose their inhibitions and begin to talk freely to each other, and that is the first step towards building self esteem," said INP+ volunteer Venugopal.

Meetings are sometimes organized around themes, such as the right of HIV-positive people to marry and have children. "The idea is to encourage members to

vocalize their feelings in a group and develop a confident attitude that will help them solve any problems they may face in their daily lives," Venugopal explained.

Men and women, including married couples, participate in the support meetings in equal numbers. HIV-positive women also met in their own support group once a month at the INP+ office until mid-1998, when they formed their own network.

"A separate support group for women was helpful to discuss issues specific to women, such as menstrual hygiene and HIV," said INP+ Vice President Celina D'Costa. "Some who felt inhibited about asking questions about safer sex in a mixed group opened up in an all-women's group. Even such topics as handling heavy household work with symptomatic HIV infection are given the time and respect they deserve, which is often not possible in a mixed group."

With increasing numbers of female members taking care of dying husbands and beginning to work to support their families, the INP+ support group meetings for women eventually led to a demand for a network to address the specific needs of this group. In July 1998, 18 women founded the Positive Women's Network (PWN), whose membership is growing slowly.

"It takes greater courage for women to take the initiative to join the network than men," said Kousalya Periasamy, a counselor working with PWN. "The fear of being discovered as belonging to a network of HIV-positive women sometimes deters women from reaching out and reaping the benefits of better information, counseling and emotional support."

The active participation of women in the earlier INP+ support group and the slow but steady growth of PWN, however, show that women can reach out. According to

D'Costa, this "dispels the common belief that women living with HIV will not come forward to fight for their concerns."

Growing Pains

While achieving increasing recognition and support, INP+ also faced many of the difficulties typical of new community-based organizations. The fact that the network is run by and for people living with HIV/AIDS made the usual problems associated with establishing an organization even more challenging, according to INP+'s staff.

For example, when INP+ members looked for a suitable office space, they sought an affordable, centrally located place with telephone access. However, they also had to ensure that the owners of the property and the neighbors did not feel threatened by presence of HIV-positive people.

HIV stigma also complicated staff recruitment efforts. Many HIV-negative people were unwilling to work in an organization run by people living with HIV/AIDS, and HIV-positive people feared that working for INP+ would mean declaring their HIV serostatus. (In May 2000 the INP+ secretariat had four staff members, two of whom were HIV-positive.)

"We explain that members who do not wish it need not disclose their identities or serostatus," D'Costa said.

"It is easier for INP+ staff and board members to be open about their serostatus in a closed group," she added. "Oftentimes, we face discrimination from individuals and organizations when we are up-front about our HIV-positive status, and the outcome of our activities becomes adversely affected."

Improving the social acceptability of people living with HIV is a top priority for INP+, and the NGO is poised to begin a media campaign showing that HIV-positive people can be healthy, responsible members of society.

Finding funds for various activities has been a continual problem. At first INP+ survived from one workshop to another on short-term grants. Today, the NGO has developed firm partnerships with several organizations, including Action AIDS, FHI, the International HIV/AIDS Alliance, Project Concern International (PCI), and the Tamil Nadu State AIDS Control Society.

INP+ recently received official approval from the Government of India that will enable it to receive funds directly from international donors. A number of organizations have pledged their support. For example, PCI plans to fund a project aimed at improving the office management and accounting skills of INP+, while FHI is supporting a project to strengthen the organizational capacity of INP+ and to raise awareness of the concerns of people living with HIV in India.

But registering as a society in order to be eligible for such funding also fed suspicions that the group was competing with existing service organizations for clients and funds.

Looking upon INP+ as a rival, some groups would not allow their clients to join the network.

"It took physical and mental grit as well as a lot of time to strike out on our own and convince some of these organizations that INP+ was not the domain of any particular NGO or group and was a common forum for all people living with HIV/AIDS," said Pillai.

INP+ successfully battled the bureaucratic indifference, ASO opposition and general social neglect and skepticism that threatened its survival. Within a short period, the NGO succeeded in giving its networks a sense of self-respect and unity -- an essential starting point. In a decidedly hostile environment, INP+ managed to promote communication among its various member networks, provided a forum for HIV-positive people to state their views without fear, and organized advocacy efforts against discriminatory practices.

INP+ also struggled to understand the exact needs and expectations of its members. In early 1999, it received technical and financial support from The International HIV/AIDS Alliance to conduct a survey to assess the needs of people living with HIV from different parts of the country. Completed in late 1999, the survey is the first ever carried out entirely by people living with HIV in India. INP+ is using the survey results to formulate a strategic plan.

"An injecting drug user living with HIV in Manipur in the northeast of India expresses needs that vary substantially from those of a sex worker from Tamil Nadu, in the south of the country," said Pillai. "India is enmeshed in constraints, such as poverty, illiteracy, gender and social inequality, and human rights abuses, that are all embedded in diverse cultures, castes, religions and languages. This makes our task as service providers a challenging one."

Challenges Ahead

The teething problems the NGO faced were almost in direct proportion to the enormity of the tasks ahead of it. Despite their abundant enthusiasm, members had little or no skills to tackle their responsibilities. The NGO therefore sought technical assistance from more experienced organizations and continues to train its members in policy development and advocacy, project management, group facilitation, public speaking, human rights advocacy and basic HIV/AIDS education.

Several INP+ members, such as Pillai and D'Costa, have proved to be eloquent spokespeople for those living with HIV/AIDS. To help other members become more effective advocates for HIV prevention and human rights, INP+ plans to train ten people living with HIV in public speaking with help from the Positive Speaker's Bureau in Sydney, Australia.

Additional support from FHI and other groups will enable INP+ to become more involved in human rights advocacy. "We hope that by continuing to build up a responsible image of people living with HIV, while throwing the spotlight on how inhumanly they are treated, we will move closer to promoting their social acceptability," said Pillai. "Our goal is to ensure that people living with HIV are legally protected by an antidiscriminatory law that will ensure their safety from unfair social and legal practices."

Access to care and quality of care are other important issues for INP+'s advocacy. D'Costa notes that care providers often voice the concern that resources are limited, "but ultimately, it is the competency and attitude of the care providers that significantly affects the duration and quality of life of a person living with HIV."

To meet all these challenges and to use new resources most effectively, the members of INP + are reorganizing their informal group into a more structured organization with a governing board, a steering committee and a secretariat. Six individual working groups will address key issues such as access to treatment, advocacy, skills building and fund raising.

INP+ plans to strengthen coordination among the seven existing state networks of HIV-positive people and the one positive women's network by increasing their access to information and helping them develop systems for better communication. The new grant from FHI will enable INP+ to provide each state-level affiliate with a computer and e-mail facilities. Financial and technical assistance from FHI will also help the networks improve their grassroots programs.

Members of INP+ will reach out to people living with HIV/AIDS in states that lack HIV-positive people's networks and services. By creating networks in the states of Andhra Pradesh, Uttar Pradesh, West Bengal, Delhi and Gujarat, INP+ members hope to achieve a nationwide network whose voice will be truly representative of the country as a whole.

Such a voice is essential if India is to contain its burgeoning HIV/AIDS epidemic, Pillai maintains. "HIV-positive people have a critical role to play in dispelling the shame and secrecy that have come to be synonymous with AIDS," he said. "Prevention can work if people living with HIV are open about their status."

Instead, Pillai notes, HIV/AIDS education campaigns continue to spread messages based on fear and moral censure that often turn public opinion against HIV-positive people, and this, in turn, deters individuals from disclosing their HIV serostatus.

"People living with HIV are part of the solution to tackling the HIV/AIDS epidemic, not the problem," he said. "It is only respect for health and human rights, irrespective of one's background or serostatus, that can eventually help slow down the spread of HIV and infuse sensitivity into the care of the sick and dying."

--Jaya Shreedhar

Jaya Shreedhar, (B.Med. and surgery), is a health communications consultant who currently works as a technical officer with the Joint United Nations Programme on HIV/AIDS (UNAIDS) in Geneva.

References

1. S Bharat. HIV/AIDS Related Discrimination, Stigmatisation and Denial in India: A study in Mumbai and Bangalore. Unit for Family Studies, Tata Institute of Social Sciences and the Joint United Nations Programme on HIV/AIDS. Mumbai, India, 1999.