Give a future for 950 Indian kids living with HIV

Some children like Sugadev fall through the net

When Krishnaveni was pregnant with Sugadev, she and her husband were tested and they were both HIV negative. Shortly after Sugadev was born, for some reason Krishnaveni was tested again and was HIV positive. Sugadev was repeatedly tested and remained negative. Because Krishnaveni does not collect her tablets regularly she was often visited by our dedicated volunteer. On a hunch, she took Sugadev for HIV testing and to her surprise – he was confirmed HIV positive. Although unusual, we assume this was due to Krishnaveni’s irregular tablet-taking and the HIV came through breast milk. Both mother and child are now both taking treatment as advised. 

The project works with Government centres and District HIV positive associations, half of which are women headed. We currently follow up 493 children and another 368 who are now young adults

Of the 493 children, 199 are sometimes irregular in collecting or taking tablets. During the year 180 were made regular. 23 are refusing treatment altogether - equal numbers of mostly older girls and boys. The main reasons for refusing are that their relations or neighbors will find out their HIV status, they feel healthy or they fear side effects.

Antiretroviral treatment is not a panacea. 156 children had some sort of medical problem requiring treatment. Tests are used to monitor whether the treatment regimen remains effective, about 75 are suspected to need second line treatment. Seven children died during the year which is higher than usual and may be associated with viral resistance.

237 were given pre-marital counselling. Nearly all claim that they will marry an HIV positive spouse, this is the old advice. In fact, of the 10 marriages we know about, six were to HIV negative spouses. 476 children have received government support 416 were helped by institutions or individuals.

There are a number of challenges. Migration is largely beyond our control. Convincing those refusing treatment is often only solved when they become severely ill. Irregular tablet taking needs better counselling or targeting. The process of regimen change when drugs stop working is slow and more advocacy at government centres is needed. All staff and volunteers need to be convinced regarding marriage messages. There is still work to be done!

A ‘big thank-you’ for your continued support!

      “They call you mummy - how can you let them go?”

Naveen and Sarathi’s parents died within a few days of each other so their Auntie Thangam took them in, even though she had two children of her own. Both boys were thin and often had skin problems. Our volunteer Rani spotted them in the government hospital and correctly guessed they had HIV. Auntie Thangam was dismayed and she had second thoughts about keeping them. Rani explained well, but it was her comment “they’ve started to call you mummy, how can you let them go?” that convinced her. The boys are on treatment, healthy and both are doing really well in school.

We are following up 554 children with HIV, 13 are newly enrolled. Nine who had gone missing were traced and their treatment was re-started. Unfortunately, 38 children were not willing to take ART drugs but it is good news that 8 of them, together with their guardians, were persuaded to start treatment during the quarter.

There are 23 children on second line therapy who are followed up very closely since it is vital that they take their tablets properly. 32 guardians were counselled to discuss HIV with their wards, 14 have started to do so.

52 children were helped to get treatment for infections and a further 65 attended medical camps. 19 children have received financial benefits. Unfortunately an 8 month old baby died of HIV related illness. Premarital counselling was given to 79 young adults, most say that they prefer marriage with HIV positive partners and one such couple were married during the quarter.

The newly available viral load test is the most sensitive in detecting treatment failure. Since a number had an unsatisfactory result, the new priority is to get them started on second line therapy as soon as possible.

(Names changed, photos are representative)