Give a future for 950 Indian kids living with HIV

Muthulaxmi, aged 16, lives with her mother. Her father died of HIV when she was 8 and she and her mother are both taking treatment for HIV. ‘Muthu’ stopped attending the children’s group meetings, not unusual as kids grow up. But her mother saw other changes – it turned out she was in love! She went missing, the police couldn’t find her, but four months later she was spotted by a relative. Her adult boyfriend, on learning her HIV status, and fearing arrest for abduction, disappeared. Now back home, she wouldn’t re-start her treatment, go back to school or talk to our volunteers. But the volunteers asked a government counsellor to visit – his words carried more weight. For the moment at least, Muthu seems to be convinced; she has restarted her treatment and is back at school.

Report for the period April – December 2021

From April 2021 we started working in three new Districts. The positive women’s networks (PWNs) in two of the old Districts now have their own resources and skills to carry on independently. So now we are supporting 798 children and adolescents with HIV in seven Districts. Of these 579 are below 18 and 219 have become young adults and need a different type of support. We also support a further 431 young adults who were never / had not been in the children’s programme. This makes a total of 1229 of which 198 are from the three new Districts taken up in April 2021.

Each District has a full time staff engaged by the PWN and there are 92 positive women as volunteers. We / they work closely with the HIV treatment centres, especially their counsellors and a number of other government medical, health and welfare agencies.

As usual, the first priority are children who are not on proper treatment. These vary from irregular tablet takers, short and long term absentees to those who absolutely refuse to take treatment. 101 children fell into these categories and we were able to turn things around for 78 of them.

The next priority is to ensure that children attend the centre in person often enough to undergo routine and special blood tests. 522 children had their CD4 blood cell count measured. This indicates how well their immune system is working. Another 51 whose cell count was low took the viral load test, the result of which can show whether the drugs are working or need to be changed. During field visits the volunteers identified 61 children in need of additional medical treatment and if necessary accompanied them to the treatment centre. 19 had chronic diarrhoea, 12 were co-infected with TB, four had herpes, 12 had fever and six had severe skin conditions.

We counselled 161 guardians and on follow up we found that 73 had either newly revealed their ward’s HIV status to them or had had meaningful discussions about HIV. Marriage counselling was given to 190 and we note that 8 marriages haven taken place, mostly to other HIV positive spouses which is preferred by most.

The PWNs shared their knowledge about government welfare schemes and helped 210 to obtain financial support for 264 as ‘vulnerable children’. Another 157 received nutritional support. The networks registered over 200 women to receive pensions as carers, or because they were too old or sick to work, and 651 received other welfare benefits.

I hope that you stay safe and well. Thanks again for your support, without you this work would not happen.

John Dalton, Founder of Arogya Agam

Note: Names have been changed and photos are representative.

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Pavithra, aged 19 was interested in marrying a young man but she held back because she was HIV positive. When the young man persisted, she went for help to  our marriage counselling sessions. Our volunteers roped in quite senior government counsellors to help her explain the situation to his family. In this case it didn’t work and the family lost interest in her. Fortunately, our networks and counsellors have many informal linkages and introduced Pavithra to a few ‘suitable boys’ who were HIV positive themselves. Pavithra hit it off with one of them, the families talked, and the marriage is set to take place in January. Our counselling is based on long experience and we know it’s better to disclose and risk losing a prospective partner than to hide your status and build a marriage on a lie which is bound to be exposed in the long run.

During the lockdown in June and July the network staff and volunteers again concentrated on getting life saving medicines to HIV positive children and others unable to collect their tablets due, for instance, to lack of transport. We helped 182 younger children, 84 adolescents and 49 widows in this way. We learned from the experiences gained in the first lockdown so this time it was easier. One important learning was to make sure that we have at least two contact telephone numbers for each child.

In the four original districts we followed up 589 younger children, 176 adolescents and 293 young adults who are in regular touch with our network staff and volunteers. Despite our best efforts Covid 19 has increased the number of children irregular on treatment and there are 13 children refusing treatment altogether. These remain a priority together with 29 children whose tests indicate lowering immunity, most of these will need regimen change to second line treatment.

We no longer collect data from two districts where the positive women’s networks have their own resources and the ability and motivation to carry on this work on their own. We have taken up three new districts where we have been in contact with 160 of 210 known children so far. In the past 6 weeks, of the 61 children not on treatment 28 have been regularised.

After a review earlier in the year we have simplified the data we collect on each child and make sure that the data is held at both district and head quarter level. The women’s networks have agreed that headquarters staff can contact children at risk directly. Training modules were updated and new volunteers were trained and old ones re-trained. The training includes basics of treatment, data recording, identification of and action on problems, how to interact with government staff and how to interact with guardians and care givers. This is important because some guardians are still reluctant to discuss HIV issues with their wards.

Thanking you so much for your interest and support, please stay safe and well. With very best wishes,

John Dalton, Founder.

Note: Names of constituents have been changed and photos are representative.

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Aishwarya is 17. She tested positive for HIV in 2012. She lost her mother to HIV when she was eight and her father shortly afterwards. She lives with her maternal aunt and was doing well at school and taking her tablets properly, then all this changed. It wasn’t that Aishwarya didn’t know all the facts because she has often attended our meetings – the trouble was that she is in love with an HIV negative boy. The boy knew her status and promised to marry her when she is 18 – whether she takes tablets or not. Aishwarya was worried that the news would leak out if she collected and took tablets and his parents would put a stop to the whole affair. Fortunately our volunteers and staff are trained to manage these difficult situations, but it took a few visits. Aishwarya is back on treatment and if the couple are determined to marry, the boy and his family will need counselling as well.

Thanks for the tremendous support from individual and corporate donors, and GlobalGiving itself. Now that the Indian Covid 19 situation is, for the moment at least, relatively under control we have re-structured our work with kids and young adults with HIV.

The positive women’s networks in two of the six Districts where we work have raised their own funds and have the capacity and motivation to monitor and support children and adolescents with HIV on their own – we will stay in touch and continue to learn from them. We are now taking up three new Districts after consultation with the local government authorities, HIV networks and others. Staff have been appointed and baseline data is being collected.

In the past three months 640 positive children were followed up in the four Districts, seven of these are newly identified.

Again there were strict Covid-related travel restrictions for one and a half months so the Networks contacted children, their guardians and other adults (including 49 widows) by phone or home visit to check their tablet availability and health status. The data was cross checked with government treatment centre records and Networks ensured that 610 out of 630 children received their drugs on time, using volunteers to deliver them when required. As usual a small number of children could not be traced. Six children were newly started on treatment, four out of the 17 children ‘lost to follow-up’ were restarted and two out of three children who point blank refused treatment were re-started. 28 children who were not regularly collecting tablets have been made regular. 42 care takers (28 men and 14 women) were counselled in detail for various reasons, 11 for the first time. 14 young women (including Aishwarya) and 16 young men, all with HIV, were given marriage guidance counselling. Eight marriages are known to have taken place: all married HIV Positive spouses.

In just three months the Networks arranged for 232 children to get government financial support and 313 received nutritional support from the government. Arogya Agam also provided food items during the lock down to 160 orphaned or single parent positive children using funds from India’s biggest philanthropist – Azim Premji Foundation.

Thanks for your past and future support – please stay safe, this Pandemic is not over and certainly not for kids with HIV in India.

With best wishes,

John Dalton, Founder

[Note: Names changed and photos are representative]

BREAKING NEWS

Again there is a total lockdown and this time even food shops are closed. There is no public transport and other vehicles are severely restricted. We are back to arguing at police check-posts to get life giving tablets to kids with HIV.

EXTERNALLY MONITORED PROJECT REVIEW

The three year project was reviewed by a team consisting of an external expert, staff, Women’s Positive Network leaders and volunteers. The team met HIV Positive children and adolescents, guardians, young women and men, volunteers, government counsellors, and Network leaders.

The team concluded that the programme is unique – no one else is doing this sort of work which should be continued in order to benefit children, adolescents and young adults with HIV. There has been good progress apart from Network strengthening and state level advocacy. Major findings:

• Three Networks have improved, one stayed the same and two are lagging. Two Networks are not properly registered and so unable to access Government funding. There is some local advocacy but few ‘rights’ cases are recorded.
• Staff paid by the project had adequate knowledge and motivation and work efficiently. When the Network had volunteers whose expenses were reimbursed (by another project) the indicators were much better. Funds allocated for volunteers in Networks without other funding sources will be well spent.
• There was good coverage for children in terms of adherence (stopped treatment, irregular tablet taking, attending clinics by ‘proxy’ testing schedule). Age appropriate disclosure of HIV status by guardians improved but some work may be needed for younger children and those cared for by HIV negative guardians.
• Beneficiaries knew about regular treatment, diet and tests. Most children and guardians felt that discrimination has reduced so disclosure to relatives and neighbours may increase their support.
• Identification of older adolescents and young adults was on target but counselling was only 80% achieved due to Covid 19. Many still have doubts and anxiety regarding their future and  married life.
• Young people of marriageable age usually stated that they prefer to marry an HIV positive spouse, but on probing it seemed that many told what they perceived we wanted to hear. There are cases of late disclosure to spouse and poor perception of safer sex. Appropriate marriage guidance needs to be increased and should emphasise that with proper treatment ‘you can marry who you want’.
• In counselling there was no big gap between inputs of Arogya Agam, Network staff, volunteers and government counsellors. 246 counsellors were interacted with, they are slowly taking up marriage and proxy counselling, but some counsellors still press for unwanted/inappropriate marriage. More work needs to be done and boys should not be left out since they are more resistant to counselling and ask fewer questions.

SUMMARY OF RECOMMENDATIONS

1. Discontinue support in two Districts where the women’s network has agreed that they can carry on the work independently. Take up three new Districts. Pay volunteer expenses if there is no other source.
2. Adherence and disclosure – All children in old and new districts and young adults already in the programme to be followed up. Identify those with adherence and other problems. Promotion of discussion on HIV status – guardian to child.
3. Social disclosure of HIV status, marriage guidance – Promote disclosure on disease to relations and neighbours and to partners and potential partners. Counsel on marriage and safer sex.
4. Services mobilisation – Services include those provided by medical centres (including counselling and prompt change of regimen), government welfare services and prevention of school drop out.
5. Networks and advocacy – Ensure networks are running on legal basis and are eligible to take up Positive association schemes and obtain government welfare benefits. Strengthen advocacy capacity.
6. Studies – marriage pattern, status of second line treatment in children/young adults.
7. Make a yearly budget based on last 12 month’s donations.

 Thank you so much for your support, please stay safe and well.

John Dalton

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