Give a future for 950 Indian kids living with HIV

Mariyammal is a 14 year old orphaned girl. She lost her father in 2013 and mother in 2015 due to HIV. She went to live with her aunt who looked after her well but died in 2017. Now she was left with an aging granny and uncle. From the beginning her uncle wanted her out, fearing she may infect his two children. Unsupported, Mariyammal stopped her treatment. The local Positive woman’s network took an interest and delivered her tablets, and at the same time counselled her uncle. After few sessions, his misconceptions were cleared. The ‘fear factor’ is often easy to dispel. Uncle is now a model guardian – apart from not yet knowing how to talk to her about HIV.

This is a short review of how you have been part of this work since September 2017.

In the first phase we were busy tracing children with HIV in 6 Districts and strengthening ties with government services. We recorded each child’s condition while identifying and motivating those who had discontinued treatment or needed tests or review. 

In the second phase we concentrated on the recalcitrant cases refusing treatment (mostly adolescent boys) and those not following advice.

In the third phase we concentrated on persuading guardians to talk to their wards about their condition and when old enough to tell them they had HIV. Many guardians were fearful and reluctant. But most of the older children knew they had HIV and were confused at their guardian’s refusal to discuss it. Disclosure and discussion are important because they lead to better treatment adherence later on. 

In the fourth phase we turned our attention to young people of marriageable age, discussions included whether it was OK to marry a person without HIV (yes), and if so, the importance of disclosure and very regular treatment.

Then came severe lockdown and the absolute priority was to get life-giving treatment to kids and their guardians who were unable to get to hospital on public transport, fearing police checks or other problems. Then we had to deal with a fresh batch of ‘refuseniks’. When things opened up, many needed motivation for additional treatment or for 6 monthly and other tests. 

This month we completed a major review. We find that there are only 5 children below age 4 with HIV – what a change! There are 416 between the ages of 4 and 15 who will need medium to long term observation and 200 older teens. 352 have turned 18 and although no longer ‘children’ we will support them as needed – including marriage guidance.    

So what now? When a major grant ends in March this work will rely almost entirely on your donations through GlobalGiving. We will ensure that we are focussing on where we can make the most impact and continue support for the children we’ve been working with.

Thank you for your continued donations, you make this vital work possible. With very best wishes and wherever you are, please stay safe.

John Dalton

PHOTOS ARE REPRESENTATIVE

NEWSFLASH

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Usharani is 15 and lives with her elder brother since their parents died from HIV. While on treatment for HIV she was often ill: it was discovered that she was resistant to both first and second line drugs. Third line drugs are only available in Chennai, so just before the lockdown in March her brother went to Chennai and collected a 3 month supply. But when her drugs ran out in June, travel was banned and there was no public transport. The Women’s Positive Network swung into action, got special permission from the authorities and organised a car to take them the 1000 km round trip to Chennai. With your help our Women’s Networks will carry on exceeding all our expectations!

Report based on July to September 2020

The work with HIV positive children and young people was badly affected by the onset of COVID-19 pandemic and subsequent regulations/restrictions/lockdowns. Although the COVID-19 situation in the area is much better, children and young people with HIV are still reluctant to go to hospitals for tablets and tests since they know that they are extra vulnerable.

There are 1052 children with HIV on record and 941 are registered with our HIV Positive Women’s Networks. Technically, some of them are no longer ‘children’, having reached 18. Of the 941, only 30 are not on treatment – 10 have yet to be started, 9 are absent and 13 have opted out. All a great improvement on the situation two years ago.

The Networks have delivered ART tablets to 289 children at home during the COVID-19 lockdowns and around 700 were counselled over the phone. Now in-person counselling is possible either at the Network office or at home. In addition, with easing of restrictions, the networks have supported 470 children to get essential routine and special blood tests.

The Networks have also provided relief materials to 515 positive children, with the support of various local sponsors.

Following up guardians of adolescents to promote HIV status disclosure is one of our major activities. We find that lack of disclosure and discussion leads to confusion, irregular tablet taking, and to older children – mostly boys – stopping treatment. Fortunately most of this work was done before the pandemic: this work had to be stopped for the past few months. We are still reluctant to conduct meetings, instead we do telephone counselling and some home visits when required. Only 12 out of the 33 guardians counselled in person have discussed their ward's HIV status. The low success rate is because we are working with guardians who have not responded so far.

We also counsel unmarried youth with a focus on disclosure – disclosure of HIV status to the spouse before marriage. 108 young HIV positive men and 26 young positive women coming up to marrying age were counselled during the period – there are more young men of marriageable age, since they marry later, and we have already covered more of the girls. We talk about safer sex, marriage choices and disclosure. This activity has also been slowed down by COVID.

Thank you so much for your support, please stay safe wherever you are and with very best wishes,

John Dalton

Photos are for representational purposes…