Enable Care & Support to end AIDS in India

Special focus on adolescents living with HIV

Challenges faced by adolescents living with HIV are manifold. A good number of them would have lost either one or both their parents to AIDS. They would then depend on their extended family members if any for food and shelter. Moreover, due to the illness of parents, some of them are forced to discontinue their studies. Owing to their difficult circumstances, many of them are not regular on the antiretroviral therapy, treatment for HIV.

With the objective of ensuring retention of adolescents living with HIV in care and improving their treatment adherence, the programme reached out to about 150 adolescents in the last one year and registered them under our project for availing services such as travel support for accessing ART, supplementary nutrition, educational support, life skills education and vocational training.

Travel supports provided through the programme took the burden off their relatives and enabled the adolescents to collect their medicines from ART centre every month. As a result, their treatment adherence levels and overall health status have improved. Similarly, nutrition support enhanced the efficacy of ART and improved their attendance in school. Those who were forced to discontinue their studies due to lack of financial resources were supported to resume their studies. The programme also provided them with a platform to share their views, receive peer support, and learn from one another.

Helping PLHIV find life partners

Social acceptance for people living with HIV (PLHIV) is a big need in our society. Disclosing one’s HIV status hinders their prospect of getting married or having a family as the society still has certain misconceptions associated with sex amongst PLHIV. With the vision of positive living our programme partner, Gujarat State Level Network of People Living with HIV/AIDS (GSNP+) with support from Reliance Industries and government of Gujarat organised a marriage consultation for PLHIV.

All our programme partners, mostly the state and district level networks across India took an active part in mobilising community members. The aim is to strengthen the support system for PLHIV by helping them find their suitable life partners and live their life to the fullest with dignity. A matrimonial website was created for interested PLHIV from various states to register themselves which was screened by GSNP+ representatives. More than 900 candidates from 8 states registered themselves with a hope to find their soul mates. So far 21 couples have found the match for each other. A special event was organised to reinforce hope and confidence of many PLHIV to see their dream of finding their life partner. The event was attended and graced by state government dignitaries.

Ankit's Story: Overcoming obstacles to help himself and others

29-years-old Ankit worked as a staff nurse in a private hospital in Kota, Rajasthan. He lives with his two elder brothers and mother and was leading a happy life. In 2015, he fell ill and got himself tested in the hospital for HIV, the lab technician informed him about his HIV status and also informed the hospital’s managing director as well as the senior doctor. After knowing Ankit’s HIV status, he was terminated from his job citing that his character was doubtful and blamed him for his infection. He was depressed after losing his job with thoughts looming over his mind whether he had committed any sin or crime and whether the society will accept him. He was apprehensive about finding another job and was worried about his career. His elder brothers supported him immensely and motivated him. He initiated antiretroviral therapy (ART) and in the hospital, he met Sangeeta from our Care and Support Centre (CSC) she explained about positive living methods and told him about her fight with HIV and informed him about the importance of treatment adherence.

He then got himself registered at the CSC in Kota, Rajasthan. Witnessing his passion for supporting others and his energetic personality, the medical officer of the hospital guided him to work with the CSC. Today he is a peer counsellor in the CSC actively extending his warmth and support to many PLHIV, motivating them to live a healthy and productive life. Presently, he is happily married and is committed to continuing working towards reducing stigma and discrimination faced by PLHIV in the society.

Currently, our programme has 310 such active Care & Support Centres (CSCs) across India, of which 300 CSCs are led by PLHIV networks and community-based organisations and 10 by Transgender community-based organisations.

Out of 1248815 PLHIV registered under our Care and Support Centre:

•    82,953 received differentiated care and support services

•    18,031  ART LFU/Missed PLHIV were re-linked to ART services for treatment

•    5,920 PLHIV linked with social protection schemes and Entitlements

•    1,950 Family members and partners of PLHIV were tested for HIV

•    35,273 PLHIV screened for TB

•    131 Pregnant Women identified at the Program linked with PPTCT

What discrimination in everyday life looks like?

Life was sailing smoothly for Sita Devi and her family till her neighbour got to know about her HIV status and began to harass her by vandalizing her household. They started to spread rumours and turned few of the villagers against her.

Sita Devi and her family resides in Sikar district of Rajasthan. She is registered at our Care & Support Centre (CSC), Sikar, and is linked with social schemes including Bus Concession, Below Poverty Line card, and Pension schemes.

The CSC Sikar team intervened and sought support from the State Women’s Commission. The action was taken by the commission to help her and additionally, she received financial assistance to build her own house under a government scheme. Following the construction of her house, the same neighbour with the support of village Panchayat members sent a notice informing her about the demolition of her house. Petrified of this, Sita again contacted the CSC team and cried for help to save her house.

Understanding the seriousness of the matter, the CSC team approached the National and State Human Rights Commission and the State Women’s Commission and highlighted the harassment meted. The CSC team continuously followed-up the case with both the commissions and finally on the order of the District Collector the issue was resolved and her house was saved. Time and again our Care and Support Centers go out of their way to help individuals like Sita to live healthy and dignified lives.   

HIJRA HABBA EVENT

HIJRA HABBA, meaning a gathering of transgender persons, is a unique annual event organised by Alliance India in support of the transgender community in India. According to the 2011 national census, there are five million transgender persons in India. Transgender people are one of the groups most affected by the HIV epidemic and are 49 times more likely to be living with HIV than the general population. The reason why they are at high risk of HIV is because of the social, economic and legal exclusion they face. Although 44% of the people living with HIV are women and children there is 7% prevalence of HIV among the transgender people.

The fifth HIJRA HABBA event took place on 22nd September 2017 at Select City Walk Mall in Delhi. The event brought the LGBT community, activists and supporters from all over the country for an evening of inclusion. The heavy rainfall didn’t dampen the spirits of all those who were gathered. The programme was packed with entertaining performances briefly interjected with voices of the individuals from the LGBT community and their concerns. The event was well covered by the mainstream news media. We believe such public events will continue to help promote acceptance and reduce discriminatory behaviour towards the LGBT community. 

World AIDS DAY Celebration

We celebrated the World AIDS DAY 2017 with the community leaders from different states, recognised for their initiative and remarkable work in HIV response, and the public gathering of more than 2000 in Delhi’s Connaught Place Central Park. The public event exhibited the journey of HIV response in India starting from the diagnosis of the first HIV case to the immense progress the national programme and all the players in the field of HIV response have made to this day. Many of these community leaders shared their personal stories at this public platform and succeeded not only in spreading awareness but garnering support and hope for every single person living with HIV. On this occasion and in the presence of dignitaries, Alliance India recognised community leaders for their admirable work through the Annual Community leadership awards. Dr K S Sachdeva from National AIDS Control Organisation, Dr Nandini Kapoor Dhingra from UNAIDS, Jyoti Mehra from UNODC, and other development partners were also present in the programme. Dr Bilali Camara, Country Director UNAIDS thanked Alliance India for bringing all key communities together through this important event. 

Being Proactive

Virudhnagar situated more than 500 kilometres from Chennai, Tamil Nadu and has a population of 2 million, where 2500+ People living with HIV (PLHIV) are in the active care of Antiretroviral Therapy Centre (ART). It was noticed that nearly one-third of the affected population were suffering from the severe anaemic condition. To address this our staff from the centres managed to resource iron syrup at much lesser price than the market price. The ART Centre has been referring those having haemoglobin level less than 8% of our centre recommending them to take iron syrup and we distributed to 945 people which effectively has helped improve their health conditions. 

The following are the key achievements reported by our pan-India programme:

• 7,604 PLHIV were registered newly in CSC and HD
• 10,870 Clients were linked with various Social Welfare Schemes/ Entitlements
• 1,465 Family members/ partners were referred to ICTC and received test results
• 19,052 PLHIV screened for TB symptoms (4S) by CSC and HD staff through ICF
• 8234 clients has been brought back to the ART centre