Give a future for 950 Indian kids living with HIV

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