EGPAF’s Ariel Clubs Keep Youth Alive

In 1993, when Javis Ndugutse was three years old, he was diagnosed with HIV. At the time, Uganda did not have access to lifesaving antiretroviral (ARVs) drugs.

Fortunately, a combination of good nutrition and treatment of opportunistic infections such as cough – which was at tuberculosis, diarrhea, skin itching, kept Javis alive.

“I am grateful to my parents. They knew that medical attention and good nutrition was my only hope. They did this until ARVs for babies were brought to Uganda,” Javis explained.

But even when the drugs were introduced in Uganda, they were often hard to come by - queues were long and by the time Javis’s parents reached the pharmacy counter, the drugs were gone.

In 2003, the Ariel Club at Kihiihi Health Center IV in the Kanungu District of Uganda, opened its doors – for the first time in the area, children were separated from the adults; younger children from older ones, in order to receive appropriate HIV care and support.

Ariel Clubs are implemented by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in 14 districts in Uganda. The clubs, named after the daughter of Elizabeth Glaser, consist of support groups for children aged 5-18 who are living with HIV. They are designed to help HIV-positive children support each other. The clubs address the psychological and clinical needs of children so that they feel confident, stay on treatment, and prevent transmission of the virus to their own future partners or children.

“We realized that the care givers [in many clinics] didn’t understand the [unique] plight of the [HIV-positive] children,” said Patience Akampurira, who manages the Kihiihi Health Center Ariel Club.

The Ariel Club’s staff also recognized that as children grew up, they were unsure of how to handle life as adolescents, living with HIV.

Javis joined the Ariel Club when he was 17 years old. He had a girlfriend who was HIV-negative and didn’t know whether it was right or wrong to have unprotected sex with her.

“Through [my] Ariel [Club], I learned that I could infect her with the virus. I learned that a condom could protect us,” he says.

Javis also learned the importance of adhering to his drug regimen. He takes three ARV pills a day, as well as supplements to keep his body strong. The pills give him side effects, including headaches and stomach cramps, but missing a dose is dangerous.

“If you miss one dose out of every 20, you’re likely to develop resistance over time,” Javis says. “[Care givers at the] Ariel Club help to monitor this.”

At Ariel Clubs, children are separated into two age groups: 5 to 9 years, and 10 to 19 years, to enable them to receive appropriate services for their age. 

The children are registered and their files reviewed; there is group and individual counseling; counseling according to gender; CD4 and viral load analysis (testing the strength of the virus); health education; and refreshments. At the end of the day, they are given their drugs plus a transportation refund.

The children are encouraged to come once a month for more drugs. The drugs are free.

Now 23, Javis serves as a peer counselor.

“I counsel those who have no hope and remind them that HIV is not a death sentence.”

He also helps to distribute information, education, and communication (IEC) materials to youth and helps with record keeping at his own cost.

“He has inspired many young people to test for HIV and many others to live positively. He once convinced a youth who tested HIV-positive not to commit suicide,” says Denis Ayebare, a Medical officer at Kihiihi HCIV, who doubles as the tuberculosis focal person at the club.

Denis makes sure that the youngsters are on treatment, investigates and treats tuberculosis and ensures that they are adhering to their drugs.

More than 200 children are members of the Ariel Club where Javis volunteers. Each of the children is attached to a Village Health Team (VHT) member and a linkage facilitator.

“[Personalized support from the Ariel Club has] improved retention and treatment of the children. There’s also reduced stigma because the children share experiences,” explains Moses Kabushenga, a VHT member at the Kanywantorogo Health Center III in Kanungu.

The Kihiihi Health Center IV is supported by the Elizabeth Glaser Pediatric AIDS Foundation, with funding from USAID–RHITES, through Uganda’s Ministry of Health.

The program provides funds for drugs, VHTs, linkage facilitators, building capacity of health workers to deliver treatment, transportation and refreshments for children.