Give a future for 950 Indian kids living with HIV

Some children like Sugadev fall through the net

When Krishnaveni was pregnant with Sugadev, she and her husband were tested and they were both HIV negative. Shortly after Sugadev was born, for some reason Krishnaveni was tested again and was HIV positive. Sugadev was repeatedly tested and remained negative. Because Krishnaveni does not collect her tablets regularly she was often visited by our dedicated volunteer. On a hunch, she took Sugadev for HIV testing and to her surprise – he was confirmed HIV positive. Although unusual, we assume this was due to Krishnaveni’s irregular tablet-taking and the HIV came through breast milk. Both mother and child are now both taking treatment as advised. 

The project works with Government centres and District HIV positive associations, half of which are women headed. We currently follow up 493 children and another 368 who are now young adults

Of the 493 children, 199 are sometimes irregular in collecting or taking tablets. During the year 180 were made regular. 23 are refusing treatment altogether - equal numbers of mostly older girls and boys. The main reasons for refusing are that their relations or neighbors will find out their HIV status, they feel healthy or they fear side effects.

Antiretroviral treatment is not a panacea. 156 children had some sort of medical problem requiring treatment. Tests are used to monitor whether the treatment regimen remains effective, about 75 are suspected to need second line treatment. Seven children died during the year which is higher than usual and may be associated with viral resistance.

237 were given pre-marital counselling. Nearly all claim that they will marry an HIV positive spouse, this is the old advice. In fact, of the 10 marriages we know about, six were to HIV negative spouses. 476 children have received government support 416 were helped by institutions or individuals.

There are a number of challenges. Migration is largely beyond our control. Convincing those refusing treatment is often only solved when they become severely ill. Irregular tablet taking needs better counselling or targeting. The process of regimen change when drugs stop working is slow and more advocacy at government centres is needed. All staff and volunteers need to be convinced regarding marriage messages. There is still work to be done!

A ‘big thank-you’ for your continued support!

      “They call you mummy - how can you let them go?”

Naveen and Sarathi’s parents died within a few days of each other so their Auntie Thangam took them in, even though she had two children of her own. Both boys were thin and often had skin problems. Our volunteer Rani spotted them in the government hospital and correctly guessed they had HIV. Auntie Thangam was dismayed and she had second thoughts about keeping them. Rani explained well, but it was her comment “they’ve started to call you mummy, how can you let them go?” that convinced her. The boys are on treatment, healthy and both are doing really well in school.

We are following up 554 children with HIV, 13 are newly enrolled. Nine who had gone missing were traced and their treatment was re-started. Unfortunately, 38 children were not willing to take ART drugs but it is good news that 8 of them, together with their guardians, were persuaded to start treatment during the quarter.

There are 23 children on second line therapy who are followed up very closely since it is vital that they take their tablets properly. 32 guardians were counselled to discuss HIV with their wards, 14 have started to do so.

52 children were helped to get treatment for infections and a further 65 attended medical camps. 19 children have received financial benefits. Unfortunately an 8 month old baby died of HIV related illness. Premarital counselling was given to 79 young adults, most say that they prefer marriage with HIV positive partners and one such couple were married during the quarter.

The newly available viral load test is the most sensitive in detecting treatment failure. Since a number had an unsatisfactory result, the new priority is to get them started on second line therapy as soon as possible.

(Names changed, photos are representative)

                               Chelladurai looking really well

12 year old Chelladurai is taking tablets for HIV. He was 5 when his parents died and he now lives with his widowed grandmother. Six months ago, he was also diagnosed with tuberculosis and his granny just couldn’t cope. Our volunteer told Alagammal, the President of the district positive women’s network, and she took charge: "I shall take care of his treatment". With her support, and excellent treatment at the government hospital, Chelladurai now looks really well and is back at school.

         How you are helping HIV Positive children - July to September 2022

Currently we are following up 545 children below eighteen years of age; eleven are new cases. We make extra visits to 15 who are on second line treatment because the original treatment is no longer working. It is essential that these children take these tablets without missing even a day.

Of the 39 children who had recently stopped attending the government clinic or were irregular, we were able to persuade 36 of them to re-start their treatment. There are always some children in the ‘missed dose’ category: this has been reduced to 15. There are 28 children who are either refusing treatment outright (mostly boys) or cannot be found – three adolescent boys were recently convinced to re-start their treatment.

Some guardians do not discuss their ward’s HIV status with them adequately: some even tell them that they are taking treatment for some other medical condition. Nearly 60 of these guardians attended a status disclosure training: 16 are now discussing HIV issues openly with their wards. We counselled 37 young adults who are planning to get married. Six, who were being pressured to marry by their guardians, said that they wanted to remain single. We recommend that these young people marry whoever they like so long as they continue regular treatment and disclose their HIV status to their prospective spouse. As in the past, most prefer to find and marry another HIV positive person. Informally, government staff and our volunteers make introductions to facilitate this.

Government hospital policy on testing has changed and most routine tests are no longer required. The doctors sent 131 children for CD4 test (the less sensitive one) on the basis of their health condition and 31 were referred for the more sensitive viral load test. 87 children were treated for opportunistic infections including 29 for fever, 15 for skin conditions, 8 for diarrhea, 6 for oral infections and 3 were diagnosed with tuberculosis co-infection and treatment started. Unfortunately, a 13 year old boy died despite best efforts.

We admitted 12 patients from other Districts and three from neighbouring States in our ward. We provide beds, food, transport and specialist treatment – mostly prescribed by the government centre. Two women admitted for palliative care died in the ward with their close relations around them. These are new services provided by your donations.

Thanks so much for your past donations. You make our work possible.

Best wishes,

John Dalton

When Samu was about 10 he was with his mother when she died in our hospital. He also tested HIV positive and he stayed on with us joining a band of waifs and strays. When we had to close our hostel Samu attended three hostels for kids with HIV, he was sent out of each through naughtiness. Somehow he passed his 12^th class exams and got a job. He remained healthy and his blood tests were good… but then not so good. Samu then admitted that for the past three years at three hostels he had thrown his daily doses down the toilet ensuring that his tablet count was always correct! As a likeable rogue he kept visiting us but still refusing tablets. It was only when he got married that we were able to convince him to protect his wife and any children.

Presently we work in 8 Districts, two are new this year. The good news, as predicted, is that the number of children with HIV is decreasing, we currently work with 691. This is because there are now virtually no new children infected with HIV from their mothers. We are still in contact with large numbers of young adults like Samu and advise them on sex, marriage and other issues. We also check they are taking tablets regularly. A recent suicide of a 16 year old girl emphasizes the need to identify and counsel potentially suicidal children.

We now offer free hospital care to HIV positive people from all the eight districts. We accept children, their guardians and other adults in desperate need recommended by the HIV Positive women’s associations. We have appointed extra attenders so those without support can be admitted. There is a good government hospital nearby which admits acutely ill patients and provides medical advice. Our ward fills gaps as a ‘half-way-house’ and for palliative care. Although most prefer to die at home we also provide end of life care.

The children are followed up by the 52 volunteers we have trained. There is a data base of 691 children and in the past 3 months we have reached 11 of the 29 children who are ‘lost to follow-up’ and 44 of the 62 children who collect tablets irregularly. Reaching the children is more difficult where children are in the care of grandparents and in families where only one guardian is HIV positive. The volunteers and staff send updates on children at risk and the central team is involved in deciding the level of intervention.

There are 27 children on second line therapy who receive extra follow up for health and absolute regularity of tablet taking. If second line drugs stop working the opportunities are limited. Currently we are analyzing the list of children who are sick or whose blood picture indicates first line therapy may not be working and making sure that the treatment centre has taken note of it and the child attends on time for further tests.

Names Changed, photos are representative.

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.