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Give a future for 950 Indian kids living with HIV

by Arogya Agam
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Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Give a future for 950 Indian kids living with HIV
Siva and Manoj 'we just want our new school books'
Siva and Manoj 'we just want our new school books'

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

Siva and Manoj before their mum died 5 years ago
Siva and Manoj before their mum died 5 years ago
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Kannaga springs into action
Kannaga springs into action

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.

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Vignesh is now the picture of health
Vignesh is now the picture of health

Vignesh’s mother was taking medicines for HIV without telling anyone, when he became ill she secretly brought him to the clinic and he tested positive for HIV. His mother was scared of Vignesh’s father who could get violent when drunk so she never mentioned anything about HIV. Even though Vignesh was often ill she was scared to take him for treatment, what if someone found out? Strangely it was Muthusamy, her husband who saved the day. He tested HIV positive during eye surgery and was counselled by one of our volunteers who knew Vignesh. Now all are on treatment and Muthusamu drinks less and now Vignesh is the picture of health.

Thank you all for your amazing donations in 2019. They have all contributed to our adolescent and young adult’s HIV programmes.

Recently we have counselled adolescents and young adults with HIV (300 men and boys, 266 women and girls) on the importance of treatment and status disclosure before marriage. Many young people living with HIV felt unsure about their options when it came to marriage. After our counselling most agreed that it would be best for them to disclose their HIV status to their partner before marriage and many thought it safest to marry a partner with HIV.

We have counselled over 200 parents and guardians on the importance of discussing their ward’s HIV status. 130 have already done this and none of the children reacted very badly although some complained of not being told earlier.

Our volunteers followed up 961 children and adolescents and 929 are taking treatment. Of these, 107 have newly started, restarted or increased regular treatment. We are still trying to convince 42 adolescents or guardians. Previously many children with HIV died, this year is the lowest ever, it is sad but only six children have died. This would have been many more without our intervention and your help.

Thanks again for your support, and a special thanks to our monthly donors.

With best wishes,

John Dalton

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Helping Yeswanth to achieve fame and glory!
Helping Yeswanth to achieve fame and glory!

Thanks for your support. Perhaps someone you know can help us with our year end target at goto.gg/34683. Anyhow please read Yeswanth’s story.

Yeswanth slipped through the net. His father had run off and his mum was so scared of the ‘Aids’ label that she took him to live with his granny in another District. We don’t see many four year olds with HIV these days so our volunteers took extra effort and phoned their counterparts in Sivaganga District who eventually tracked them down. Now they are both on treatment. His granny is sure that Yeswanth can now live up to his name which means ‘one who attains fame and glory’!

With your help we have reached $8000 of our 'giving season'  target of $10000. There were 60 donations on Global Giving's 'Giving Tuesday' on December 3rd and our share of the bonus was $1727. Not only that, we have 15 new donors and two more have signed up for a monthly donation, Global Giving matches the 4th month's donation 100%.

Through your generous donations we have enrolled 951 children with HIV in the six districts in South India where we work. We make sure they take their treatment, help them to stay at school, sort out problems with neighbours and help them to get government benefits. There are still some like Yeswanth who we can’t find or are refusing treatment, but we are not giving up on them!

We have counselled over 200 parents and guardians on the need to discuss HIV with their younger wards, this is important because all the research suggests that full disclosure by age 13 is best and helps to stop children from going into denial and rebelling against treatment when they get older.
We have discussed marriage with adolescents and young people with HIV on the pros and cons of marrying another HIV positive person and the need to disclose their status and how. We dialogue with government counsellors on the need to take up work with adolescents.

Thanks to all of you, and to those who have helped in December, remember there are still some days to go for us to reach the target. Please spread the word!

With very best wishes for Christmas and the new year,

John

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Photos in reports do not necessarily mean the children have HIV

Treatment for HIV positive children is getting better all the time and it is free. But some guardians only know half the story. Alagar, aged 11, is now taking treatment, but only after an 18 month struggle. He lives with his granny and uncle’s family and he never knew his father. They all saw his mum die of HIV. “Those drugs made her worse not better” his granny grumbles. “Look at Alagar, he is fine and active and doing well at school – why should I risk making him take those strong drugs? She knows a little about the 6 monthly blood monitoring test. “His CD4 is over 800, what’s wrong with that?” she asks our volunteers proudly.

It is true that medication used to be started when the CD4 (immunity measuring blood cell) dropped to around 300 but we now know that the treatment works best when started early. Our volunteers tried and tried to convince her, sometimes Alagar would get fed up and hide behind a tree! One day his uncle was listening in and commented “When we feel really sick we do what the doctors say quick enough, we know Alagar is really sick inside, perhaps these people know what they are talking about”. Uncles are sometimes accused of being indifferent – but this time it was uncle who tipped the balance!

Through your generous donations we have enrolled 951 children with HIV in the six districts in South India where we work. We couldn’t find 138 because of incomplete or false address, or because they have moved away or died. We have persuaded 63 children who we knew were not taking medication to start or to re-start. These need close follow-up and encouragement, the guardians need to be convinced that very regular tablet taking is vital. Even now, there are 41 not on treatment and we hope we can convince them before it is too late.

We have counselled over 200 parents and guardians on the need to discuss HIV with their younger wards. We think that 127 have now done so but there may be around 167 who are still reluctant. Some are embarrassed - they may feel guilt or shame - some think the children are too young and are afraid about how they might react. All the research suggests that full disclosure by age 13 is best. Many of these children know they have HIV and are confused because it is not talked about. It is also known that good discussion helps to stop children from going into denial and rebelling against treatment when they get a bit older.

We have discussed marriage with 146 adolescent girls who were born HIV positive. We know that 13 of them are already in love with HIV negative boys. We discuss the advantages and disadvantages but always encourage and advise early disclosure. More recently we have been talking with 183 HIV positive boys and young men, over half were infected through unsafe sex rather than being born with HIV. Most say that they would disclose their HIV status to the future spouse and many say they would prefer to marry HIV positive girls. The government counsellors are best placed to discuss with these young people, but for a variety of reasons they often don’t. At the moment we are in dialogue with 49 of these counsellors and hope that some at least will take up work with adolescents.

There is still plenty to do and we want to thank you again for your support.

One other thing. December 3rd 2019 is “Giving Tuesday”. GlobalGiving will give away HALF A MILLION US DOLLARS to boost each and every donation made on that day. We will get back to you shortly with more details of how we can maximise the way we can improve more young lives.

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Organization Information

Arogya Agam

Location: Theni District, Tamil Nadu - India
Website:
Project Leader:
Sabu Simon
Theni District, Tamil Nadu India
$50,197 raised of $60,000 goal
 
612 donations
$9,803 to go
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