Kallol Ghosh has developed a complete network of services designed to integrate children living with HIV/AIDS into society. Working primarily with abandoned street children, he has established a residential center that aims to meet their basic housing, education, and healthcare needs. Beyond such service provision, however, he includes affected children in a variety of social networks, through partnerships with other children’s homes, and several educational and civic-oriented organizations.
The New Idea
Combining advocacy and networking with the building of hospitals and schools for HIV and AIDS-infected children, Kallol is not only improving the lives of the children associated with his organization, Organization for Friends, Energies & Resources (OFFER), but also creating a more AIDS aware and educated society to ensure that one day all HIV/AIDS infected children are able to receive the care and support they deserve. Under the umbrella of OFFER, founded by Kallol and his friends in 1987, Kallol founded Anandaghar, a home for abandoned HIV/AIDS infected children, in 2003, after realizing that too many HIV/AIDS infected children were being abandoned on the streets by parents too poor or too sick or too afraid to keep them. A school for HIV/AIDS infected children quickly followed as Kallol learned that regular schools often turn away such children or strike them off their rolls. Kallol also helps place the children with local government schools once they have completed their initial years of primary education. In order to provide appropriate health care facilities, Kallol built a 120 bed hospital in Kolkata to cater exclusively to HIV/AIDS infected children. Combining these services with outreach to a larger network of organizations, doctors, teachers, communities, and government officials, Kallol fosters both a nurturing and supportive environment for HIV/AIDS infected children. Not only is Kallol changing the lives of HIV infected children and whole communities by offering services and positive and educational interactions for all involved, but he is also changing the way educational institutions and the Government of India respond to the HIV/AIDS epidemic and its effect on children. Kallol also conducts regular awareness-building and advocacy programs among doctors and works with adolescents and youth in AIDS education programs. With replication, further public policy advances, and better data collection on the epidemic in the region as his current projects, Kallol is holistically changing the way the Indian government and society understand the HIV/AIDS epidemic and support its youngest victims.
Across India, the AIDS epidemic spreads alongside a complex intersection of social and societal issues as difficult to resolve as the disease. For children made vulnerable by their HIV/AIDS status, this is especially true.HIV/AIDS infected children are discriminated against by the education system, by local communities and sometimes by their own parents. There are regular instances of schools refusing admission to children and of children being mocked and traumatized by their peers on account of their HIV status. Ostracized by society, these children are often abandoned by their families, especially if their parents have succumbed to the virus.The size and extent of spread of the AIDS epidemic in India is documented in the AVERT report which states, “In 2007 UNAIDS and NACO estimate—between 2 million and 3.6 million people lived with HIV. This puts India behind South Africa and Nigeria in numbers living with HIV.”In India, mother to child transmission is another major issue. This is further compounded by a lack of adequate testing facilities for mothers-to-be. While there are no official estimates on the number of children with AIDS, a NACO report (2007) states that there are 50,000 children born with AIDS every year.With the population of HIV/AIDS infected children growing each year, a comprehensive approach that combines care for children and families, HIV prevention and awareness education, and advocacy is desperately needed. Kallol is building the infrastructure and the networks to ensure proper care for HIV/AIDS children in the future.
Kallol’s strategy for AIDS affected children is modelled on the work that he has done under the banner of OFFER since 1996. OFFER first worked with street children to create a network of services that would protect them from the outside world but also help them integrate with surrounding social networks. Over the years OFFER built a great deal of credibility and rapport with the Indian Ministries of Health and Education and extended its services to start residential centers for teaching disabled children and for those infected with HIV. In a sense, Kallol’s long history advising and cooperating with the Indian Ministries of Health and Education “paid off” when the government approached him to handle the cases of three HIV positive children. Realizing the great challenges faced by these children and societies’ resistance to accepting HIV positive adults and children, Kallol threw himself into this new field of work. At present OFFER runs a community-based education sponsorship program, a rehabilitation program for children living on railway platforms, and provides homes for children without parental care and community schools and homes for children with learning difficulties. OFFER runs three homes for children under its umbrella of services including Apanjan, a school for learning-disabled children, Apanghar for abandoned children, and finally Anandaghar for HIV/AIDS infected children. Kallol’s long history of work with marginalized children, reaching out to society, other COs and the government, are now not only helping him influence public health policy in the realm of HIV/AIDS, but also allowing him to build quickly on the existing OFFER infrastructure and partnerships to spread more rapidly and support HIV infected children faster and at a lower cost.Set up in 2003, Anandaghar and the associated services for HIV/AIDS infected children have been developed on the lines of the past work done by OFFER. After setting up a home, a school and hospital to take care of these children’s basic needs, Kallol worked with the women and doctors in Kolkata and rural Bengal to dispel destructive myths about HIV infected patients and to provide important education about the disease to both communities and makers of public policy. Despite the large numbers of HIV/AIDS infected people in India, public understanding is very low. To ensure that his initiatives and advocacy are absorbed into the cultural and policy responses to the HIV/AIDS epidemic rather than simply sustained by his network, Kallol reaches out to the public, the medical community, and the government in very effective ways. To increase public awareness and understanding in neighbourhoods and communities around Kolkata and rural Bengal, Kallol conducts workshops and cultural events and activities to help acquaint families with the facts of HIV/AIDS and induce comfort and empathy for both children and adults with HIV/AIDS. Children from these neighbourhoods and HIV/AIDS infected children from Anandaghar are given the space to play together in the “Child-to-Child” program with the parents and staff present to learn and offer support. Group meetings are held in schools with school staff, parents, District administrative staff, and others for these local stakeholders to ask questions, air their views and concerns and learn more about the disease. “Watch-dogging” also takes place to ensure that HIV/AIDS infected children are not expelled or encouraged to leave school on account of their disease status.Kallol’s advocacy and influence on public policy in India is grounded in his long history of working with the government for the protection and rights of marginalized children. A large component of his advocacy work involves regular trainings, discussion, and collaboration with officials in the Education and Health departments. This work with the government of India also influences his work with communities as he is able to persuade officials such as the Chief Medical Officer of Health, the Block Medical Officer of Health, the Chairman of the District of Primary Education Board and others to meet and speak with school staff and parents. Additionally, a letter campaign driven by Kallol to the Speaker of the State Legislative Assembly finally resulted in the creation of an HIV/AIDS committee to work further on the issues.Collaborating with medical bodies and educational institutions, Kallol also works to inspire more accurate and expansive data collection as well as major public policy change with regards to the distribution of anti-retroviral drugs in rural areas. Currently, antiretroviral distribution takes place at a precious few institutions designated by the National AIDS Control Organization (NACO) around the country. Often shortages and a lack of access make it difficult for people in remote areas to access these life-preserving drugs while also making health monitoring difficult. Working with the School of Tropical Medicine and Calcutta University, Kallol trains AIDS workers, conducts workshops for doctors, nurses, and community members and hopes to decentralize the antiretroviral strategy to reach more people in need. The School of Tropical Medicine has also partnered with Anandaghar to provide basic medical care to its HIV infected children. Additionally, as part of a joint project between the University of Chicago and Calcutta University on the state of paediatric HIV/AIDS in West Bengal, the study team sent a proposal to study the Anandaghar facility and its model of “social-psychotherapy.”Kallol and his team at Anandaghar also work closely with several COs to both collect data on the HIV/AIDS epidemic in ten districts in West Bengal and to identify populations of children with HIV in need of care and protection. He has set up ties with HIV+ persons at the Kolkata Network Plus (KNP+) and Bengal Network Plus (BNP+) and along with them through centers located in districts like Howrah, Hooghly, South 24 Parganas, North 24 Parganas, etc., is working towards offering the services under one umbrella. These centers also identify HIV+ children and bring them to Anandaghar. In addition to seeking to bring more children into the Anandaghar and OFFER community, Kallol encourages and guides other organizations to replicate his model. The Matrisangha Janakalyan Asram, which has worked in the health sector for over three decades, is based in Kolkata and covers areas of North Bengal. They have partnered with OFFER to replicate the Anandaghar model in their North Bengal network specifically to create support for children living with HIV. Likewise, The Positive People’s Network in Burdwan District has approached Kallol to consider the possibility of setting up a pediatric care and support unit like Anandaghar in the Burdwan District. This would entail designing similar strategies and approaches to community, administration, and government that has proven effective in the Anandaghar model.Anandaghar began serving only three children but today serves twenty-nine, and OFFER has set up a 120 bed Hospital to care and protect those children with hopes to replicate the hospital and its services in other areas. While many organizations presently work with HIV/AIDS infected adults, there are few who focus solely on the unique needs and challenges of HIV/AIDS infected children and their place in public policy and society. While Kallol offers these children a home in Anandaghar he also goes far beyond this service as he works towards system change. Kallol is changing the way all HIV/AIDS infected children and whole communities in the region experience the HIV/AIDS epidemic. Linking important government officials and institutions with schools, communities, COs, doctors, and universities, Kallol is creating a new culture and new public policy in the HIV/AIDS epidemic. The culture he is building is and will continue to give ever more HIV/AIDS infected children the support, protection, and health care they need while also providing government institutions, schools, families, doctors, and society at-large with the education and awareness they need to protect, accept, and care for India’s HIV/AIDS infected children.
As a young man, Kallol’s father encouraged him to act upon the issues Kallol cared about. Thus, when Kallol found himself troubled by the lives of the homeless people in Kolkata, his father suggested he go live with the homeless to find out what they really needed. Kallol did that and his experiences later helped him set up OFFER.This is an approach that has stayed with Kallol throughout his life. His initiatives are born out of personal conviction and backed by life experiences. Most importantly, they are all built upon the principle of providing sustained and dedicated intervention to the problem at hand.Kallol’s biggest influences were his school, operated by the Ramkrishna Mission order of monks, and the Missionaries of Charity founded by Mother Theresa. He has followed their activities closely and imbibed a lot of their methods and approaches into his way of life. He feels this helps him deal well with the problems that arise in his work.Over the years, Kallol has built a lot of goodwill among the people he works with but the nature of his work has also angered many who do not understand it. There was a period of time when Kallol and his family endured death threats by local thugs who accused Kallol and OFFER of spreading AIDS instead of resolving the problems that arise from it. Kallol deeply on his strong relationships with the people he works for and on his role models to persevere this difficult time to continue the critical and innovative work he is doing for HIV/AIDS infected children in Kolkata.In September 2008, the President awarded Kallol with an honorary doctorate at the Residence of Consul General, Ital, Alipore, Kolkata.