Give a future for 950 Indian kids living with HIV

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.

Refusal to take ART, the drugs that keep children with HIV alive and well, is more common in boys but not exclusively so. Aarthi, a 17 year old girl was born HIV positive and lives with her mother who is also HIV positive and taking regular treatment. She has not supported her daughter to take ART as she thinks that it causes unpleasant side effects. Our volunteers kept trying to contact Aarthi but her mother prevented it. When they did finally meet her, they managed to persuade Aarthi to restart treatment, but her mother would still not agree. A worried, Arthi phoned our volunteers who really showed their worth. They were able to introduce Aarthi and her mother to another family who had successfully dealt with a similar situation. They could give just the right kind of help and advice. This worked. After 4 months patient work by our volunteers, Aarthi has finally restarted ART and is determined to live a better life!

We work in a large rural area of South India and this is what we have been able to do thanks to your donations.

We hit our target of enrolling 940 children with HIV and we are still trying to trace 143 more children in need of help. We’ve found over 100 children not taking life-saving treatment, and persuaded 55 to take the correct medicines so far.

We know good communication between children and their guardians and honest discussion about HIV is vital. We’ve spoken to and counselled over 200 families and found that most guardians thought that their 10 to 13 year old wards didn’t know their HIV status but in fact over 80 percent do know they have HIV. Most guardians were afraid of how the children would react if they brought up the subject. Even in families where everyone has HIV, it is rarely discussed. So we are working with these families to give them the knowledge and confidence to discuss these difficult issues openly. We find that when they do this it is a great relief for all concerned.

We’ve studied and learned from 57 young women born HIV positive and who have recently married. We’ve created educational materials for HIV positive young women to help them handle the difficult subject of how to choose a partner, discussing the advantages and disadvantages of marriage to an HIV positive or negative man and the need for early disclosure.

In a new initiative we have counselled 600 HIV Positive unmarried young men about disclosure of their status to future marriage partners and how to practise safer sex. The men tend to say that they will only marry HIV Positive women, perhaps because they think this is the ‘right answer’. But with new drugs, this advice is out of date and we are educating them to make more appropriate choices.

We still face many challenges in helping children to take consistent and proper treatment: guardians need information and support especially when the children are ill as they often blame the drugs. Teenage boys in particular often drop out of treatment programmes which puts their lives in danger. We are doing our best to challenge the myths and misinformation about HIV that we encounter. There is still plenty of work for us to do! 

Thanks for your support and interest

Note that those pictured do not necessarily have HIV

IMAGINE YOU ARE A HIV POSITIVE YOUNG WOMEN LIVING IN INDIA, SOON YOU WILL BE EXPECTED TO MARRY.

As you will see below, complex decisions must be made. This is a draft of a handout to women in this position.

Please ask us questions. What else would you want to know? Please give us your feedback and help us to improve it. Please contact John Dalton at

dalton.jn@gmail.com

[*We have included some notes in brackets to explain the Indian situation for those not familiar]

Some thoughts about HIV Positive young women who want to get  married.

We followed up 57 HIV Positive young women who were born with HIV and got married over the past few years. Based on their experience we have made some observations which may interest you. This is not to advise you what to do, but to help you think about it. These thoughts are aimed at young HIV Positive women because the study was conducted among them. Many things apply to HIV Positive boys and young men also.

Medical, maternity and ART* Centre staff generally give good advice. But a few still give old ideas and information. Some advise HIV Positive girls and young women not to have children, to terminate pregnancies or even not to marry at all. We think this is wrong advice and suggest you ignore it. Nearly all of the mothers we studied  were raising healthy children.

[* ART is antiretroviral therapy, the medicines which are essential to keep people living with HIV alive and healthy]

 Just like anyone else you can marry a relation, have an arranged marriage, have a love marriage, marry within or outside your caste*. But you have an extra choice to make – whether to marry an HIV Positive or an HIV Negative man. Here are some of our findings. The choice is yours.

[*Most marriages in India are arranged by guardians, and nearly all arranged marriages are within the same caste, marriage to relations is very common]

Marriage of an HIV Positive young woman to an HIV Positive man

In the past, HIV Positive young women were advised to only marry HIV Positive men due to fear of transmitting the disease to the husband. Things have changed. If you are on ART you can marry who you like. However there remains a strong belief among young HIV Positive people, HIV Positive adults, the medical profession and the community at large that marriages where both partners are HIV Positive is preferable. In our study over half the marriages (34 out of 57) were to HIV Positive men. Positive Networks, NGOs, and counsellors continue to facilitate such relationships often at the request of the guardians. Some charge money for these matrimonial services. 

Possible advantages of marriage to an HIV Positive man

-       Family more often agree to the marriage since they may have taken part in arranging it. For this reason there may be better family support and less objection if the husband is a different caste. 

-       Disclosure is less of a problem and there is less need for secrecy since the spouses, their guardians and others close to them already know the HIV status of both partners.

-       Possibly there are fewer marriage breakdowns – the study found that most marriage breakdown was when the husband was HIV Negative.

-       Social acceptance - many people think that marriage between HIV Positive people is more responsible.

Possible disadvantages of marriage to an HIV Positive man

-       The husband may be much older due to the more limited choice in finding a match. This has the potential to cause problems, for instance some older and thus less sexually active men may start to suspect their wives of infidelity.

-       If only for the sake of caring for children, extra attention is required related to health since both partners have increased risk of becoming ill. Strict and regular attendance in person at ART Centre are essential. Close adherence to the testing schedule is essential.

Marriage of an HIV Positive young woman to an HIV Negative man

There is no reason why a young HIV Positive woman should not marry an HIV Negative man. With better ART there is very little chance of HIV spreading to the husband or baby. There are important precautions:

-       Absolutely regular ART and personal attendance at ART centre. Close monitoring of CD4. Quick action in case of infections. Insist on Viral Load testing if you get infections or lose weight. The husband should be tested periodically*. 

-       When pregnant or not trying for a baby – use a condom (most couples do not follow this) 

[*CD4 is the first line test of level of immunity, if it falls there is a chance the ART is not working and needs to be changed. Viral Load testing is a more sensitive test if virus is detected the person becomes infectious again and the ART drugs must be changed]

 Factors in girls and young women marrying an HIV Negative man. 

As you know most marriages are arranged to relations or within the caste. In our study only a few such marriages were arranged. Most HIV Positive women who marrried HIV Negative men did so through a love marriage, often by eloping.

This may be unavoidable but it also carries the risk of disapproval and lack of support from families on both sides – HIV complicates matters more.

But however you marry, as an HIV Positive young woman you have another choice to make. If the groom does not know and accept that you are HIV Positive you have to decide whether or not to tell him and when.

Disclosing your HIV status carries the risk of rejection before marriage. 

On the other hand your husband WILL find out one day, perhaps when you become pregnant. When this happens, our study shows there is a very high risk he may desert you. 

All focus groups we talked to strongly recommended that you tell your HIV status before marriage. Your local Positive women’s Network will arrange good people to help (phone …………………).

But that is the choice YOU must make.

 Please scroll down to the section "About this Project" and click on the  photo of the boy to see our new short video.

Thanks, as ever, for your support,

John Dalton

So far we have counselled numerous children like Radha, many of whom have similar concerns. We are in contact with 864 children living with HIV out of the 1044 on our records. We provide various types of support such as arranging government benefits or providing direct assistance. A few children have been assisted to go back to school or college. On occasions young women are pressured to marry when they don’t want to and recently we have helped to stop three unwelcomed marriages.

We work through six HIV positive women’s associations whose volunteers are vital for the work. We have identified 127 children who either should have started treatment or have discontinued, nearly all of them are boys. These are a priority and so far we have persuaded 20 of these children to re-start their treatment. One of these is Arun, aged seven.

When Arun’s mother died his father sent him to live with his aunt and denied that anyone had HIV. Arun became sick and was diagnosed with HIV, but still everyone was in denial. One day his aunt took him to the health centre with a letter from his father saying that he didn’t want any treatment for Arun, or for anyone to come to the house. Our volunteer spotted them and took them to meet the chief doctor. The Doctor was very busy but he knew and respected the volunteer so took time to explain all about the disease and the treatment. Arun is on regular treatment now.

Children and guardians are counselled individually and in groups. Even though most guardians of children aged 10-13 think their wards do not know what disease they have, we find that most know or suspect. It is clear though that they are not well informed. They ask questions like

-       “How did I get this disease?”

-       “What are these tablets and how long must I take them?”

-       “When will this disease go away?”

-       “Why do I have to have these blood tests?”

Recently we followed up a group of 11 children whose guardians we had trained and who had promised to discuss HIV with their wards, eight of them had done so. All but the two youngest children knew they had HIV. Nearly all knew that the tablets were to kill or control HIV virus and most knew that the tablets had to be taken lifelong. Training guardians works!

Many of the older children are coming up to marriageable age, girls in particular since they marry younger. We are studying how best to advise and counsel them. We followed up 34 married HIV positive girls who were all infected at birth. Most had married between the ages of 19 and 22, the spouses a few years older. 14 of the spouses were HIV negative and 20 were positive. 33 became pregnant - no babies born with HIV and no spouses were newly infected because the young women were all on treatment which prevents HIV transmission. We can assure young people that living with HIV is not a bar to marriage or to having healthy children.

We consulted 25 young people living with HIV aged between 17 and 22. The majority felt that it was best to marry other HIV positive people although recent studies show this is not really necessary. They were very clear that disclosure of HIV status before marriage was a must.

Thanks again for your support, please find us other supporters - we want to do so much more.

Please note that children and adults in photos are not necessarily affected by HIV.

• Report printable version with photos in the text (PDF)
  

We work through six HIV positive women’s associations which offer counselling and other support for children living with HIV. In the first three months we met and counselled 869 children and guardians. Many children were traumatised by the loss of one or both parents to HIV and AIDS and by the knowledge that they carry a life-threatening virus.

Before you read on, all donations received on 27th of November attract matching funding from Global Giving. Please tell your friends and relations about our work. An easy link to follow is goto.gg/34683.

We found that a number of children are not taking the medicines that keep them alive. One such is Veeran, a 14 year old boy.

Veeran’s mother became seriously ill and suddenly died due to HIV. Veeran and his dad also tested ‘HIV Positive’. They swore to tell no one and gave a letter to the health centre to say they didn’t want treatment and no one was to visit their house. Recently Veeran was hospitalised for open skin sores and high fever. Mariammal, our volunteer, found his younger brother in tears by his hospital bed. “I can read you know! He has got HIV which means AIDS. Is this the end for poor Veeran, will he die soon, when will I get it?” Mariammal spent hours with the boys and they were convinced, but how to sway their father? With Mariammal’s help, he was persuaded, both have now started treatment and Veeran’s sores are healing. One condition however, we must only meet them at the hospital or contact them by phone.

Some children face stigma and discrimination even from their own family. Meena’s story shows how this can be overcome.

Meena’s mother died in childbirth and she was adopted by her aunt and uncle who had two sons and were happy to have a baby girl. She had no serious health issues until this year when she turned 13. She was diagnosed with HIV and everyone was shocked. Her cousins, now married with children of their own, were scared that she might spread the disease. So she was sent to live in an orphanage which she hated. Our volunteers were called in to help when she refused treatment. “Please get me out of this place, I just want to go home” cried Meena. It took a number of visits to sort out the cousin’s fears, and her aunt and uncle had missed her and really wanted her back. Now it is all smiles and Meena is happy again and thinks she has a bright future.

Another important finding is that out of 142 guardians interviewed in detail, only 30 told us that their child knew their HIV status. But when we question children aged between 11 to 14 we find that most of them know they have HIV but lack important information and many are confused because their guardians won’t discuss it. As Vimala commented:

“All I wanted was the truth - I didn’t talk to my mother for two days when she did eventually tell me because I was so angry that she had hidden the truth for years. Now it is so easy for both of us because we can talk about it.

Thanks again for your support – but do please find us new supporters - we want to do so much more.