Ariel Clubs Transform Fear Into Hope for Children Living With HIV

By Eric Bond, EGPAF

Cleophas Nyakato is a 14-year-old girl who embodies the Ariel Club motto to “live positively.”

Eric Bond/EGPAF, 2015

Rosemary, a 16-year-old girl living with HIV, is a survivor.

“Mum, dad, my young brother, and my sister all died of AIDS in a period of eight months in 2004,” says Rosemary. “I was afraid to live and afraid to die.”

After the deaths of Rosemary’s parents and siblings, health workers from Comboni Hospital visited Rosemary at the home of her grandmother in Ryabagoma, a village in southwest Uganda. Rosemary tested positive for HIV and was immediately initiated on treatment. She did not learn her status, however, until she was 8—when her grandmother brought her to an Ariel Club meeting at the hospital.

Ariel Clubs are implemented by the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in nine countries in sub-Saharan Africa. The clubs, named after the daughter of Elizabeth Glaser, are 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. The club that Rosemary attends was formed under the Strengthening Tuberculosis and HIV/AIDS Response in Southwest Uganda (STAR-SW) project, led by EGPAF with funding from the U.S. Agency for International Development (USAID).

Rosemary represents the success of self-care and the smooth transition from pediatric to adult HIV care for which Ariel Clubs are designed. She has support to disclose her HIV status to peers and the initiative to navigate health care independently. She says that the club has helped her stay on treatment because everyone around her knows her status and supports her adherence to antiretroviral therapy. This is important because adolescents living with HIV are at particular risk of discontinuing treatment during the time when they move out of pediatric care.

“Rosemary is a model girl for Ariel children,” says Adrine, a nurse at the antiretroviral therapy clinic at Comboni Hospital. “She acts maturely and does inspiring work like following up peers who have dropped out or are not adhering to treatment.”

No longer a young child, Rosemary mobilizes other Ariel children for quarterly meetings and mentors them in dance and drama. She has successfully reached out to 10 of her peers who have dropped out of treatment, supporting their return to care. Several Ariel Club members fear stigma associated with HIV, so Rosemary accompanies them to the clinic for treatment, supports their adherence to medication, and encourages them to disclose their status to loved ones.

Unfortunately, Rosemary knows about stigma firsthand. For the past two years, she has been unable to attend school; family members refuse to pay her school fees because she is HIV-positive. With a strong desire to resume studies, Rosemary learned how to make paper beads and rosaries to earn a living. She is committed to living positively despite poverty, chronic care, and the turbulence of adolescence.

Cleophas, an energetic 14-year-old who embodies the Ariel Club motto to live positively, also discovered her HIV status at her first Ariel Club meeting. With the dedicated care of her mother and the support of the club, Cleophas possesses the courage to face nearly any fear, including a speeding rubber ball. Her favorite sport is dodgeball.

Cleophas’ story is unusual because she is the only member of her immediate family living with HIV. After years of unexplained illnesses, Cleophas was tested for HIV when she was 9, and her parents were shocked when the test came back positive. The entire family was tested and her parents and seven siblings—including an identical twin sister—tested negative for the virus. The family reckoned that Cleophas was transfused with tainted blood during a bout of malaria five years previously. This is an unusual situation because medical protocols in Uganda keep the blood supply safe.

“I was taking drugs,” says Cleophas, “but I didn’t know why. I was concerned because my sister was not taking drugs. I suspected that I had HIV because I had learned about it in school, so I asked my mother, ‘What is HIV?’ My mother just said that HIV is a virus; she didn’t answer my concern.”

That’s when Cleophas’ mother decided to bring her to an Ariel Club meeting at Ruhoko Health Center IV, where Cleophas is treated. Nearly 110 children and adolescents gather for club meetings every three months when they come for their antiretroviral drugs.

“One of the objectives of Ariel Club is to make sure that children living with HIV know their status,” says Joy Angulo, EGPAF’s senior Community Linkages officer. “Many children grow up not knowing that they are HIV-positive, and they don’t adhere to treatment because they don’t know why they are taking drugs. It is difficult for caregivers to disclose to their children, so the Ariel Club helps facilitate that.”

“When I come to the Ariel Club, the health workers tell me many things like what is good nutrition and I should love myself and I should take my drugs so that I can live long,” says Cleophas.  “I have a lot of friends in the club. We talk among ourselves about what time we take our drugs and things like that.”

“I take my drugs at seven in the morning and seven at night. In the morning, my mother wakes me when it is time to take my drugs.  In the evening, I ask my mother for her phone to see the time; then I go inside when it is seven minutes to seven, and I wait to take my drugs.”

Healthy and cheerful, Cleophas says that she hopes to become a nurse one day like her surrogate aunties at the health center who treat and mentor children in the Ariel Club. Having faced HIV surrounded by support, Cleophas remains fearless. When asked about her favorite animal, she smiles confidently and says, “Crocodile.”

Rosemary and Cleophas are two of the more than 570 adolescents that the STAR-SW project is supporting through Ariel Clubs.