‘A living reality’

Sunday Newsday Investigation

Child Rights Activist, Gregory Sloane Seale, is appealing to government to put more measures in place for the youths of the nation, since a large number of them are living with the HIV/AIDS virus. HIV/AIDS is becoming the leading cause of death among 15-44 year-olds in the English and Dutch speaking Caribbean. Infant and child death rates have risen sharply and 14 million children worldwide are now orphans because of the disease. Statistics from UNAIDS show that by the end of 2003, some 3,600 children in TT had been orphaned because of the HIV/AIDS virus.

Everyday, almost 2,000 babies are infected with HIV during pregnancy at birth or through breast-feeding without effective interventions.
About one third of the infants born to HIV-positive mothers contract the virus, but most of these infants will die before their fifth birthday.
Even though this is a worldwide overview regarding HIV/AIDS, this may soon become a stark reality in TT and the rest of the Caribbean. Statistics from Caribbean Epidemiology Centre (CAREC), showed that by December 2002, there were 20,000 youths under the age of 15, living with the HIV/AIDS virus in the Caribbean region.

The figures reflect the reality of the large number of youths in TT living with the virus. A patron of the Cyril Ross home for children living with HIV/AIDS agreed that the problem of children living with the virus has worsened. The number of children now living at the home is just one indication, but an indication, nevertheless. She said the home, which was supposed to have accommodated about 25 children, now has about 35, with more visiting the out-patients’ clinic at the institution. Officials are hoping Government will expand the facilities to provide the best health care for the number of children suffering with HIV/AIDS, and to construct another one in Tobago since the problem is much worse in the sister island. Cyril Ross Home’s, Acting Manager Hyacinth Cross, said the number of children they are seeing, may not necessarily show an increase in those living with HIV, but the fact that they are now coming out to get treatment for the children. But Sloane Seale, chairman of the TT Coalition for the Rights of the Child said that looking at statistics from a global and regional point of view, he felt that the picture looks “grim” for TT in the near future and will become “grimmer.”

By the end of 2002, there were 7,000 deaths of HIV children under the age of 15, in the Caribbean region alone. In addition, there were 7,000 newly infected children. “It rises that much more and there are a lot more people walking around the country, who do not know they have the virus and many will not know unless they get tested,” said Sloane Seale. Public Relations Officer of the TT Youth Council, Ravi Lutchman, said: “More than 14 million children up to 14 years old have been orphaned by HIV/AIDS on a global level. In TT, similar figures count over 3,000 children within the same cohort that face the same bleak future, ambling through in solitude and desolation.”

World statistics on children living with HIV/AIDS

A USAID report on children with HIV/AIDS has projected that 44 million children in 34 countries hardest hit by HIV/AIDS will have lost one or both parents from all causes, but primarily from AIDS, by 2010. The report states: “Although these numbers are staggering they represent only a portion of children who are affected by HIV/AIDS worldwide. Millions more are living with parents who are ill, often becoming the primary caregivers for their parents, younger siblings and others.” Statistics from the UNICEF summit hosted by Barbados on March 21, 2004, revealed that HIV/AIDS is becoming the leading cause of death among 15-44 year-olds in the English and Dutch speaking Caribbean. An estimated 2.3 percent of the Caribbean population is living with HIV/AIDS.

Out of the 60,000 individuals who became infected in the region in 2000, half were young people between the age of 10 to 25. According to the UNICEF report, today, more than half of all new infections strike people under the age of 25. Girls are hit harder and younger than boys.
Infant and child death rates have risen sharply and 14 million children are now orphans because of the disease. In another similar report, by the end of 2002, 42 million were living with HIV/AIDS, including more than three million children under the age of 15. By the end of the same year, AIDS killed more than 2.5 million adults and 610,000 children. Everyday, almost 2,000 babies are infected with HIV during pregnancy at birth or through breastfeeding. Without effective interventions, about one third of the infants born to HIV-positive mothers contract the virus, and most of these infants will die before their fifth birthday.

The Cyril Ross Home —

Children living with HIV/AIDS

The Cyril Ross Home for children living with HIV/AIDS, is supposed to be a haven as they battle with the deadly virus. As more and more children come to the home for treatment and care, it is proving to be a huge challenge. Despite the challenges, it is a place where miracles occur and the fight against discrimination on people living with HIV/AIDS, is a living example. Every child living there, from as early as three years old, is very aware of his/her illness and the eventual outcome...death. Sean, 15, who is one of the eldest youths living there, knows just that. To the outside world, he is called, “The AIDS boy.” To him, the name-calling is an opportunity to educate people who don’t now about the virus, that one can live an active and fruitful life for a very long time.

At least twice a day, the children are given their daily dosage of cocktail drugs. Some receive it in the form of injections. Others like Sean, have to swallow at least nine, large-sized tablets, in order to keep their immune system at a healthy level. Without the medication, they succumb to full-blown AIDS and die. It is the only way for their survival, until a cure for AIDS is found. A few of the older youths cannot go to a normal high school, nor other public schools because of the discrimination. “The schools have said that they cannot allow HIV positive children coming there because the other parents will not allow their (normal) children to be in the same school with HIV children,” he said. Sean is one of the many HIV positive children who have been privy to cruelty from the public. He said the name-calling hurts, but agreed that it is something he has to live with. “I try to console myself that these people do not know better. If they were educated enough, they would know better. If they were in my situation, they would not like it,”said Sean.

As long as he lives, he wants to fight against the stigma of discrimination. Sean recently attended the HIV/AIDS summit in Barbados and wants to be a spokesperson in the future. “Before I die, I want to see discrimination against HIV/AIDS victims stopped and hope that the rate of infection, especially in TT and all over the world will decrease,” he said. Andy, seven, and many others like him, including babies, look like healthy, normal kids.
Andy was very intrigued by my tape-recorder and asked to speak into it. He said he is very happy, because he has “many mommies and gets lots of hugs” everyday. As caregiver at the Home, Sandra Stapleton said, working with HIV children, has made her become a better mother to her own children. I was not afraid to hug or touch him, because I know one cannot get the virus from touching a person who is infected with the virus.

Indeed, the Home’s Acting Manager Hyacinth Cross believes that the people who die from HIV/AIDS can live longer and healthier lives if people don’t treat them like lepers. “A lot of people with HIV/AIDS die from broken spirits and not necessarily from the virus itself, because we have seen that these children and even adults can live very long lives once they are given the necessary medication,”she said. Other health institutions are now sending children with HIV/AIDS to the Cyril Ross centre. Cross believes this is happening because the other institutions feel that the treatment at the home is of a better standard and there is no discrimination there. “There are still nurses and doctors at major health institutions who discriminate and scorn children and one has to wonder if these medical practitioners have a clue about what the virus is about,” she said. Cross said with the growing demand to deal with children living with HIV/AIDS, they need a whole new facility since the Cyril Ross Home could barely accommodate any more children.

Despite the challenges, she said the Home has been an example that miracles can happen — the people who have given of themselves, the caregivers and those who have extended a helping hand to make sure the children live a day longer. They are calling on Government to train more people to work with these children, people who will be open-minded and not discriminate against them, but provide the love and care they will need to help them survive.