Give a future for 950 Indian kids living with HIV

The world’s biggest ever lockdown was announced by India at four hours’ notice. Nothing was allowed on the road and our immediate concern was for children with HIV who were running out of life saving tablets. Jai, aged 3, his mother and father are all HIV Positive. His father is sick with TB as well. The family had recently moved two Districts away to hide their HIV status.

All the District borders were sealed and we knew that Jai’s tablets were running out. Our volunteer Kannaga sprung into action, and defying check-posts collected all the family’s tablets. She was told it was impossible, but even at the height of the lockdown her personality and determination won through. She got permits to cross two District boundaries to deliver her precious consignment.

When lockdown was announced, HIV networks successfully lobbied for tablets to be available at all major health centres, with two month’s supply given on each visit. In the six districts where we work volunteers contacted guardians by phone to remind about tablets, advise about coronavirus and offer support. Many were single mothers without family backing or those caring for orphaned children.

In the first round we contacted 713 personally or by phone and ensured tablet supply, and we home delivered tablets for 103 children. We could not immediately contact 206 children: this information gap highlights an urgent need to get two telephone numbers for each child.

Due to travel restrictions and no public transport we are still unsure about 50 children. Some restrictions have now been lifted, so we work hard to ensure uninterrupted drug supply, repeat drugs to children on special treatment, essential testing and management of complications.

We made sure guardians on treatment obtained it. 358 HIV positive children in need were supplied with extra food, clothing and other essentials. In addition 262 widows, women who have not disclosed their status or those without transport have been assisted to receive their medication.

Since February much of the routine work with children and adolescents has had to be put on hold. After lockdown was announced, the government initiated food security measures, but only for those registered as being below the poverty line. Many of the Tribal people, Dalits and other marginalised families we work with were missed from the list or had been denied registration under these schemes.

On the basis of strong requests, pressure and relaxation of formalities in this emergency, the authorities have started to register these families. In the meantime we have distributed emergency rations to over 1000 families using funds from Azim Premji Philanthropic Initiative, India’s biggest charity.

Fortunately, nearly all people living with HIV are registered for the usual government schemes and additional ones specifically for PLHIV. This is because all the districts where we work have strong PLHIV associations constantly lobbying for rights and entitlements. Arogya Agam has supported, facilitated and promoted dozens of such organisations over the past 25 years and it has really paid off!

I want to thank you for all your support. These are difficult times for nearly everybody but more difficult for some than for others. We know all about donor fatigue, thanks or staying with us and please stay safe and well.