Give a future for 950 Indian kids living with HIV

When Samu was about 10 he was with his mother when she died in our hospital. He also tested HIV positive and he stayed on with us joining a band of waifs and strays. When we had to close our hostel Samu attended three hostels for kids with HIV, he was sent out of each through naughtiness. Somehow he passed his 12^th class exams and got a job. He remained healthy and his blood tests were good… but then not so good. Samu then admitted that for the past three years at three hostels he had thrown his daily doses down the toilet ensuring that his tablet count was always correct! As a likeable rogue he kept visiting us but still refusing tablets. It was only when he got married that we were able to convince him to protect his wife and any children.

Presently we work in 8 Districts, two are new this year. The good news, as predicted, is that the number of children with HIV is decreasing, we currently work with 691. This is because there are now virtually no new children infected with HIV from their mothers. We are still in contact with large numbers of young adults like Samu and advise them on sex, marriage and other issues. We also check they are taking tablets regularly. A recent suicide of a 16 year old girl emphasizes the need to identify and counsel potentially suicidal children.

We now offer free hospital care to HIV positive people from all the eight districts. We accept children, their guardians and other adults in desperate need recommended by the HIV Positive women’s associations. We have appointed extra attenders so those without support can be admitted. There is a good government hospital nearby which admits acutely ill patients and provides medical advice. Our ward fills gaps as a ‘half-way-house’ and for palliative care. Although most prefer to die at home we also provide end of life care.

The children are followed up by the 52 volunteers we have trained. There is a data base of 691 children and in the past 3 months we have reached 11 of the 29 children who are ‘lost to follow-up’ and 44 of the 62 children who collect tablets irregularly. Reaching the children is more difficult where children are in the care of grandparents and in families where only one guardian is HIV positive. The volunteers and staff send updates on children at risk and the central team is involved in deciding the level of intervention.

There are 27 children on second line therapy who receive extra follow up for health and absolute regularity of tablet taking. If second line drugs stop working the opportunities are limited. Currently we are analyzing the list of children who are sick or whose blood picture indicates first line therapy may not be working and making sure that the treatment centre has taken note of it and the child attends on time for further tests.

Names Changed, photos are representative.