A pitch for young lives changed by HIVhttps://indianexpress.com/article/news-archive/web/a-pitch-for-young-lives-changed-by-hiv/

A pitch for young lives changed by HIV

He looks a lot younger than his 12 years. He sits hands clasped,eyes downcast on a bench in the corridor of what he now calls home

He looks a lot younger than his 12 years. He sits hands clasped,eyes downcast on a bench in the corridor of what he now calls home. “I was always alone at home. I did have friends but their parents told them never to play with me — in case they catch the disease,’’ the boy says. Then tears stream down his face. His teacher consoles him,he does have friends now.

The boy is one of 49 children at Carmel Jyoti in Manipur,for children either infected with HIV or orphaned because of it. “We don’t like to call it an orphanage,rather a care centre,” says Sister Pauline George,the director,who runs it with three other nuns of the Congregation of Mother of Carmel,headquartered in Kerala.

“When I visited villages for my missionary work,families would come up to me and ask me to take the children with HIV. The parents of many had died of HIV-AIDS,” says Sister Pauline,who has been living in Manipur since 1981. “It is only over the past six or seven years that we saw that the number of children with the disease was on the rise.”

With little resources,Sister Pauline decided to open a school and a residential hostel. She got ART free from a government hospital but monthly visits from doctors in the hospital have now stopped.

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“The children are very difficult to handle sometimes. They are sometimes moody and restless and can be very aggressive. The ART affects their power to focus. So they can never keep up in class with other students their age,” she says.

All children in the home were suffering from trauma when they came but the home has no means of dealing with this.

The 12-year-old can rattle off what “disease” he has,how he got it from his parents and how it is spread “by using needles and drugs”. So can his best friend,also 12,who lost his father when he was two months old and his mother when he was barely five. He was handed over to the centre when his ageing grandfather could no longer take care of him. “I want to join the Army when I grow up — I watch the Republic Day celebration on TV and I want to take part in the march past,” he says. The first boy pitches in,“I want to join the Army because I want to serve my country and my people.”

According to the latest report of the Manipur Aids Control Society,the state has 2,578 HIV-positive children: 1,378 boys and 1,200 girls. Montu Ahanthem,secretary of Wide Angle,which works with HIV-positive families in the state,says the number is closer to 3,000.

“The epidemiology report of MACS has not been updated. At one stage,intravenous drug users showed the highest incidence and the virus was spreading through them. But what we have found is that mother-to-child transmission has gone up… Manipur is the state with the third highest HIV prevalence,” says Ahanthem. He said the government and the MACS now have no schemes for HIV-positive children or widows with HIV.

Dr R K Rosie,project director of MACS,admits there is a gap in the epidemiological report and agrees there are currently no schemes for HIV-infected children. “We did start a Prevention of Mother to Child programme several years ago and this has somewhat stemmed the spread to children. While it is better than in other states,there is still a stigma attached to children with HIV and in some cases they may even be abandoned if their parents die. It is difficult to tell whether the incidence is actually rising as many parents prefer to hide the fact.”

An HIV-positive woman,37,who lost her husband to AIDS in 2005,says their older son Ronaldo is not infected but her younger son is. “I didn’t know till many years after we married that my husband was an intravenous drug user. It was only after he died that I got myself and my sons tested. We started ART within two months,” she says.

Like many parents in the state,she has not told her younger son about his infection. “At the first school I went to,I informed the principal he is HIV-positive so that appropriate precaution could be taken. His admission was immediately cancelled. So naturally I never informed the second school,” she says. Like other children infected,he is extremely aggressive,she says,and sometimes difficult to handle. “He keeps asking me why he falls ill more often than his friends or his older brother. When I give him the ART pills he wants to know why. I simply tell him it’s because of a skin disease that both of us have,” she says.

HIV progression in children is more rapid than in adults and one of the fallouts is that the children age faster than their peers. According to the latest NACO estimate,India has 2.4 million people living with HIV.

Under-15s with HIV

Maharashtra 5.52%

Goa 4.71%

Tamil Nadu 4.10%

Andhra Pradesh 3.92%

Karnataka 3.59%

Manipur 2.40%

Nagaland 1.94%

Percentages are for HIV-infected out of total under-15 population