Give a future for 950 Indian kids living with HIV

Muthulaxmi, aged 16, lives with her mother. Her father died of HIV when she was 8 and she and her mother are both taking treatment for HIV. ‘Muthu’ stopped attending the children’s group meetings, not unusual as kids grow up. But her mother saw other changes – it turned out she was in love! She went missing, the police couldn’t find her, but four months later she was spotted by a relative. Her adult boyfriend, on learning her HIV status, and fearing arrest for abduction, disappeared. Now back home, she wouldn’t re-start her treatment, go back to school or talk to our volunteers. But the volunteers asked a government counsellor to visit – his words carried more weight. For the moment at least, Muthu seems to be convinced; she has restarted her treatment and is back at school.

Report for the period April – December 2021

From April 2021 we started working in three new Districts. The positive women’s networks (PWNs) in two of the old Districts now have their own resources and skills to carry on independently. So now we are supporting 798 children and adolescents with HIV in seven Districts. Of these 579 are below 18 and 219 have become young adults and need a different type of support. We also support a further 431 young adults who were never / had not been in the children’s programme. This makes a total of 1229 of which 198 are from the three new Districts taken up in April 2021.

Each District has a full time staff engaged by the PWN and there are 92 positive women as volunteers. We / they work closely with the HIV treatment centres, especially their counsellors and a number of other government medical, health and welfare agencies.

As usual, the first priority are children who are not on proper treatment. These vary from irregular tablet takers, short and long term absentees to those who absolutely refuse to take treatment. 101 children fell into these categories and we were able to turn things around for 78 of them.

The next priority is to ensure that children attend the centre in person often enough to undergo routine and special blood tests. 522 children had their CD4 blood cell count measured. This indicates how well their immune system is working. Another 51 whose cell count was low took the viral load test, the result of which can show whether the drugs are working or need to be changed. During field visits the volunteers identified 61 children in need of additional medical treatment and if necessary accompanied them to the treatment centre. 19 had chronic diarrhoea, 12 were co-infected with TB, four had herpes, 12 had fever and six had severe skin conditions.

We counselled 161 guardians and on follow up we found that 73 had either newly revealed their ward’s HIV status to them or had had meaningful discussions about HIV. Marriage counselling was given to 190 and we note that 8 marriages haven taken place, mostly to other HIV positive spouses which is preferred by most.

The PWNs shared their knowledge about government welfare schemes and helped 210 to obtain financial support for 264 as ‘vulnerable children’. Another 157 received nutritional support. The networks registered over 200 women to receive pensions as carers, or because they were too old or sick to work, and 651 received other welfare benefits.

I hope that you stay safe and well. Thanks again for your support, without you this work would not happen.

John Dalton, Founder of Arogya Agam

Note: Names have been changed and photos are representative.