‘In India,HIV/AIDS carries a woman’s face’

Dr Glory Alexander recently received the coveted Dr BC Roy National Awards from the President of India, Pranab Mukherjee. Founder of ASHA foundation, Dr Alexander is known for her work in the field of HIV/AIDS in Karnataka. In a brief conversation with M Neelam Kachhap, she talks about her work that culminated into the awards

Tell us about the state of HIV/AIDS in India.

According to the HIV estimates of 2015 brought out by NACO the estimate of people living with HIV (PLHIV) in India is 21.17 lakhs. The seroprevalence is 0.26 per cent . Children below 15 years account for 6.54 per cent  and women account for 40.5 per cent  of all HIV infections.

How has the treatment changed over the years?

In the 90’s we were losing PLHIV because there was no treatment and patients were dying from opportunistic infections. The turning point came in early 2000 when India started manufacturing drugs for  HIV/AIDS generically and this reduced the cost of Anti – Retroviral Therapy (ART) drastically. Further, in 2004, NACO started providing ART free of cost to patients, and it was also available in the private sector at affordable rates. I would say that ART has made the single most important difference in the life of a PLHIV because it extended both the quantity and the quality of life of a PLHIV and turned this infection from a life threatening, fatal illness to a chronic, manageable illness.

How did you start your NGO?

There was genuine concern in the 1990s, that after Sub Saharan Africa, India would be the next flash point for HIV/AIDS. By this time, we were beginning to see HIV infection in our own community and the trauma, stigma and pain that went with it. Simultaneously, I was asked to give lectures to students on HIV/AIDS and I was witness to the ignorance, concern, fear and vulnerability of young people. It was then that I decided to step out of my comfort zone and start ASHA Foundation, my NGO. My husband was a huge support in this venture and encouraged me to follow my heart. The first project was the HIV/AIDS helpline which received 346 calls on the day it was inaugurated in June 1998. This was followed by the HIV/AIDS clinic and the Adolescent Health Education programme.

Tell us about your work through the NGO?

The ASHA Foundation provides a range of services in the field of HIV/AIDS.

• Counselling and testing services: We started the first private automated AIDS Helpline in the country which received almost 4,00,000 calls and have had more than 20,000 manual telephone calls and around 8000 counselling sessions have been conducted. Additionally, we respond to email queries and along with I-volunteers , we conduct awareness programmes.
• Adolescent health education: A teachers’ manual dealing with adolescent issues was developed in-house and taught to students by trained teachers. So far, more than 2500 teachers have been trained all over the country. About one lakh students have used the curriculum in one way or the other  in the past and currently more than 300 schools, colleges and other institutions are participating in the programme. About 40,000 students in Pune, Mumbai, Nagpur, Tamil Nadu, Andhra Pradesh, Bengaluru, Mangalore, Mysore, Kolar, Hunsur, HB Kote, Koppal, Shimoga, Dakshin Kannada and Hubli are doing the programme.
• Prevention of Mother to Child Transmission (PMTCT) of HIV: In partnership with some hospitals in Kerala, Andhra Pradesh, Tamil Nadu and Karnataka, ASHA Foundation has worked in the field of PMTCT. So far 1,64,064 pregnant mothers have been tested for HIV of these, 855 were diagnosed as HIV-positive and treated with ART and other measures so that the children would be born HIV-negative. In our cohort, we have brought down the risk of transmission from 30 per cent to less than two per cent. So far, in our partner hospitals, we have trained more than 100 nurses and 40 other staff as counsellors, sensitised around 2000 doctors and other staff on PMTCT, and around 20,000 other nurses, nursing and medical students, ward aides, paramedical workers, community health workers and community have been sensitised about HIV/AIDS and PMTCT.
• Camp Rainbow: This is a psychosocial intervention where we take HIV-positive children, between 10 and 16 years of age, to a residential summer camp for five days and teach them life skills, health and hygiene, arts and crafts, knowledge of HIV/AIDS, environment preservation etc. These camps have improved their self-esteem, confidence, ART adherence and social behaviour. Children from Bengaluru, Mysore, Mandya, Kolar, Ramnagara and Andhra Pradesh have attended these camps. We also train volunteers from colleges who give three weeks of their time night and day to help in these camps.
• Support for children and their families: The care component includes medical care and support to a large number of HIV-positive individuals and their families through provision of ART, treatment for TB and opportunistic infections, care for HIV-infected and affected children through educational support, nutritional support and ART, empowerment of women through knowledge creation, vocational training, job placements, micro-credit and formation of Self Help Groups (SHGs), with SHG bank accounts.
• Capacity building: We have built the capacity of doctors, nurses, teachers, counsellors, community health workers and community through our programmes.
• HIV Research: ASHA Foundation is recognised as a Scientific and Industrial Research Organisation by the Dept  of Science and Technology, Government of India, focusing on operational  research in Prevention of mother to child transmission of HIV infection, adults with HIV, children with HIV, adolescent health education, counselling in HIV, and socioeconomic aspects of HIV. We have published papers in scientific and educational journals.
• Advocacy: Facilitation of free legal services for HIV infected women, facilitation of free housing for women under Rajiv Gandhi housing, facilitating access to government schemes such as widows’ pension and facilitating educational support for children through Child Welfare Committee.

What challenges did you face how did you overcome those?

Challenges have been many. The main challenge of course has been in raising funds to run our NGO. We cater to the poorer section of the community in our work and funds are always needed to help them. Many people think that HIV/AIDS is a lost cause, but with the advent of ART, this is not so and so many things have been possible. I am eternally grateful to funders like Krishna of INDO-MIM, and others who have supported us for so many years.

Share some of your notable moments.

In India, HIV/AIDS carries a woman’s face. At the micro level, the greatest burden of HIV infection has been on the Indian woman. She is the one who gets married young, gets infected in marriage, becomes a young widow, is left behind- HIV  infected , with young, dependent children, uneducated, financially unstable and facing stigma and discrimination – and she is strong, she copes- she rises from the ashes and again makes a life for herself and her children.

What are your plans for the NGO in coming years?

ASHA Foundation will continue its work in the field of HIV/AIDS. We want to extend our AHE programme across the country. Through Camp Rainbow, we want every HIV positive child in Karnataka, to experience the psycho-social intervention that improves their well being, self esteem and social behaviour and makes them confident, self-assured individuals in their own right.

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