Give a future for 950 Indian kids living with HIV

Siva sent an urgent message: “My brother Manoj and I have run out of tablets.” These orphan brothers had been in a hostel but the government closed it due to Covid 19. Then all public transport stopped. Siva (15) and Manoj (16) are now stranded with their aged grandma in her tiny hut. We have supplied their tablets and the three of them scrape by on government handouts and some help from us. Now the boys have another big worry: “We can’t go to our old school for new school books! How will we study?”

India is hard hit with Coronavirus which has brought new challenges. Siva and Manoj’s story shows two of them. Towards the end of March complete lock-down was suddenly announced. Initially nothing was allowed on the roads and our first worry was to get life saving tablets to kids with HIV.

The HIV networks successfully lobbied for tablets to be available at all the local health centres. In the six districts where we work volunteers contacted guardians by phone to remind about tablets, advise about coronavirus and offer support. Many of those with difficulties were single mothers without family backing, or relations caring for orphaned children. Since April we have made over 400 home deliveries of tablets for children and guardians.  

In April we contacted 713 personally or by phone and ensured tablet supply. We could not immediately contact 216 children: we now know we must get two telephone numbers for each child. Since there is still no public transport most work has to be done over the phone. Vital tests, and other treatment for sick children, are suspended and tuberculosis goes undiagnosed.

We are still trying to persuade 20 children (mostly teen boys) to take treatment. Our brave volunteers from positive women’s networks have done well. Nearly all our HIV positive children are now getting their all-important tablets. But we are concerned that 24 have migrated or are untraceable, and five are newly refusing treatment through lack of counselling.

We have persuaded schools to give out spare textbooks to stranded children and now Siva and Manoj have their books and can watch the classes on television at a friendly neighbour’s house. Our priority in the coming month is to make sure kids don’t miss out on education. Not all of them have such friendly neighbours.

These vulnerable children and their guardians now have to cope with both the world’s current pandemics, and the economic, social and educational disruption. Children and adults with HIV can be very ill with Covid 19. Your support allows us to address all these aspects as best we can.

Thanks again for your continued support in these difficult times, please stay safe wherever you are, with best wishes,

John Dalton

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.