HIV Is Not the End

HIV is not the end for children living with the disease in Malawi thanks to support from their EGPAF & CDC-funded group.

Eric Bond, EGPAF

“Who wants to play fishy-fishy?” calls out Vincent Nyapigoti.

More than 50 young voices scream back, “Fishy-fishy!”

Vincent directs staff at the Mchinji District Hospital to bring out the ropes and within less than a minute, children are hopping all around the hospital yard. Fishy-fishy, or jump rope, is a favorite activity of this club for children living with HIV in central Malawi. Once a month, these children, ages 9 to 14, come to the hospital to test their viral load, collect antiretroviral drugs, receive psychosocial counseling, and play with their friends. An older group, ages 15 to 20, meets on a different Saturday. Both groups are called teen clubs, although the younger group primarily comprises preteens. 

“Play therapy is important,” says Vincent, a linkage nurse for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). “When they play fishy-fishy, they keep on jumping and feeling life. They make their bodies to be healthy. They feel that they are not neglected by the world. Having HIV is not the end.”

 

They feel that they are not neglected by the world. Having HIV is not the end.

 

“They also play football. They play netball. They have the rings [Hula Hoops]—and they move around just to make themselves happy. Also, they beat the drums and dance and sing songs.”

Inside the HIV testing and counseling center, some children play quieter games like bawo (mancala) and cards.

These play activities reinforce that these children living with HIV are just like their peers. It helps the children feel connected to each other, building a natural network of support.

Almost all of the children were infected with HIV as infants—during pregnancy, birth, or breastfeeding. Many have suffered HIV-related illnesses as young children. Once diagnosed, many were told that they needed to take medicine every day, but did not know why. This has made some children feel that they are tainted. 

Vincent, 35, grew up during a time when more than one-third of Malawians were living with HIV, and no antiretroviral treatment was available.

“I was born from a family of eight. Currently we are only two. I lost all of my sisters and brothers. They died because of HIV. This increases my passion to work for HIV-positive children.”

As a linkage nurse, Vincent acts as a mediator between people living with HIV and health workers, making sure that families are tested for HIV and that those individuals living with HIV—of whatever age—accept their status and are adhering to treatment. Vincent was trained to provide psychosocial support to children living the HIV through a special program provided by EGPAF and the Children Investment Fund Foundation (CIFF) working with the African Network for Care of Children Affected by HIV/AIDS (ANECCA). He helps parents disclose HIV status to their children and prepare them to join the club.  

“Before we take the child to teen club we have a partial disclosure session,” says Vincent. “We tell him or her a soldier story: ‘In your body, there are soldiers who help you to fight against infection. You need to take drugs so that your soldiers stay healthy.’”

“They do ask a lot of questions: ‘Is it only me? My friends don’t take drugs. Do my friends have the soldiers?’”

“So we tell them that the other kids also have the soldiers, but that some kids have soldiers who are weaker—so they have to take the drugs.  ‘We want to make your soldiers strong, so you need to adhere to drugs.’”

“Little by little, we do reach the point of telling them about HIV. At times they might be agitated, but in the end—because we are experienced in how to handle the kids—they reach the point of understanding and accepting. After accepting that they are HIV-positive, we take them into teen club.”

“Parents are very happy to have the teen club,” says Vincent.  “We take the burden from the parents, and the children learn how to take their medicine, take care of themselves.”

In all, 144 children belong to the teen clubs at Mchinji District Hospital. Vincent is happy to report that all are adhering to treatment. Then he pauses for a second and recalls a child from two years ago who failed to show up at teen club.

“We discovered that the child was not missing—he was dead [from an HIV-related illness]. It was a blow. As staff for the Elizabeth Glaser Pediatric AIDS Foundation, our goal is that they should live. AIDS is our enemy.”

Teen Clubs in Malawi are supported by the Elizabeth Glaser Pediatric AIDS Foundation with funding from the Centers for Disease Control and Prevention (CDC).