Enabling Families Affected or Infected with HIV/AIDS to Live Life Positively
India is home to the third largest number of people living with HIV in the world (UNICEF). More than a quarter-century ago, when HIV/AIDS was endemic and the Government of India launched its first National AIDS Control Program (NACP), all efforts were geared towards prevention and control. Very few organizations worked to care for and support those families already infected or affected by HIV/AIDS. Committed Communities Development Trust (CCDT) was one of the pioneering organizations in Mumbai to develop and implement a Home-Based Care (HBC) program for families living with HIV/AIDS.
Home-Based Care comprises a continuum of psychosocial, health (medical & nutrition), education, legal & livelihood support. Spanning all 24 wards of Mumbai, the program enables HIV/AIDS infected or affected families, and their children, to become self-reliant so that children are not abandoned or institutionalized. CCDT thus endeavors to mitigate the impact of HIV/AIDS on families unable to cope with deteriorating health, emotional stress and fear of uncertain death.
Pivotal to this journey from despair to hope—and onwards to self-reliance—is the sustained support of others who have also made the journey. CCDT facilitates this through the formation of family support groups that meet every month to discuss common issues, share similar concerns and draw strength from each other’s struggles and coping strategies. Seasoned members of these support groups mentor families that have recently discovered their seropositive status and are struggling with issues of acceptance, discrimination or stigma.
Once a year, support group Members from across the city come together to celebrate ‘living life positively with HIV’ as well as raise issues that concern them and their children. Given that over 220,000 children are infected with HIV/AIDS in India, it is crucial to highlight the challenges and address the rights of these children. Therefore, the theme for this year’s Annual Support Group Meeting was ‘Safeguarding Child Rights’ and panel discussions included representatives from Mumbai District AIDS Control Society (MDACS), the Department of Women and Child Development (DWCD) and the Departments of Education and Health. Children from CCDT’s support groups have discussed with these officials on how their rights to survival, development, participation, and protection—can be better safeguarded.
Around 600 members of CCDT’s support groups from across the city joined the event to discuss Child Rights in the context of HIV/AIDS, along with government representatives.
The event started with a beautiful dance performance by children and included several plays on child marriage, child labor and child protection. The two-hour-long session was full of information and entertainment.
Children also presented a mime act to spread awareness about child rights, helpline numbers, and non-negotiables for children’s safety.
The event concluded with a panel discussion between children and government officials including Dr. Shrikala Acharya (Addl. Project Director, MDACS) and MR Anil Gunjal, (Deputy Education Officer) who answered questions raised by these children on issues related to safety, health, and education.
During the Panel Discussion, a child asked Dr. Acharyawhy doctors were always late for their hospital shifts and why there was a single queue for adults and children. In response to the question, Dr. Acharya said:
“We are planning to implement an attendance system to ensure timeliness and discipline. And we understand the problems faced by children waiting for long in queues. So, we have already put up notices in hospitals ensuring that children and senior citizens are able to move up to the front of queues when they come for a health checkup.”
Deputy Education Officer, Mr. Anil Gunjal, spoke to children about school systems, discipline and the importance of playgrounds. He reiterated how every child was entitled to admission in a government school and shared his contact details the audience, encouraging them to call him in case of any education-related, rights violations.
The session concluded with the promise to keep the views and rights of children at the forefront of all support group meetings henceforth.