By Amy Fallon
KAMPALA, May 7 2014 (IPS)

Every morning at six a.m. before he goes to school, and every night at six p.m. after he gets home from school, Emmanuel, 11, knows what he must do: take his antiretroviral pills.

“They are very sour,” says the shy and gentle boy, who was born with HIV and is cared for by his elderly grandmother, his parents having died from AIDS when he was one year old.

“But I don’t mind taking the medicine. I’m used to it now,” he told IPS.

Emmanuel may be taking his medicine properly, but for many of the 35,500 children in Uganda on HIV treatment, daily ARVs are too much of a bitter pill to swallow, especially if they don’t understand why they need them.

Healing hug: Counsellor Cathy Kakande empowers HIV-positive children with medicine, information and lots of love. Credit: Amy Fallon/IPS

The Young Lives study presented by Ugandan researcher Rachel Kuwuma at a conference in Cape Town in December found that not knowing why they needed medicine was a big reason for non-adherence in young people.

“At first I didn’t know why I was taking drugs and didn’t put much effort into it so sometimes I would just throw it away…in the toilet,” Mika, 11, is quoted in the research, which looked at HIV-positive children in Uganda and Zimbabwe over two years.

In Uganda, in 2012, just one in three children who needed ARVs received them, according to United Nations data.

Cathy Kakande works for Namugongo Fund for Special Children, a Ugandan group providing Emmanuel with the drugs for free. She is also a counsellor to the boy and his grandmother. Kakande told IPS that Uganda’s policy is not to reveal their HIV status to children until they reach 13 years of age.

“We told Emmanuel ‘this is your life, so if you don’t take the medicine you’ll die’,” says Kakande. “He takes it because he’s supposed to.”

But children will be children, and Dr. Edward Bitarakwate, the Uganda director of Elizabeth Glaser Paediatric AIDS Foundation, says not knowing can lead to a child refusing to co-operate.

“Some types of medicine taste horrible and if you’ve not told the child that they have a chronic condition that needs to be treated, that can be a problem,” he says.

Some children living with HIV are told by their carers they have tuberculosis (TB) and other diseases.

“The child is, like, ’man, this TB, I’ve read about it, I can’t have TB for five years,'” Bitarakwate tells IPS.

In Uganda, like in many other African countries deeply impacted by AIDS, children’s drug taking is commonly mediated through carers. If a parent, sibling or guardian is discriminated against or fearful of being shunned for being HIV-positive or having an HIV-positive child, they may be reluctant to give ARVs or not be open about it.

This is but one of many reasons why the scale-up of ARV treatment in Africa is leaving children behind. In 21 high-burden African countries, only 34 percent of eligible children received ARV therapy compared to 68 percent of adults.

“Some mums don’t want to be seen carrying a shopping bag full of medicines,” says Bitarakwate.

It is worse when the child acquired HIV from the parents, he says: “There’s that guilt.”

Like the virus, self-stigmatisation can be transmitted: “The child grows up and finds out ‘I’ve got this terrible disease and my parents won’t even tell me about because it’s a bad thing’,” says Bitarakwate.

Emmanuel’s grandmother fears telling her neighbours near the Kampala house she rents about her HIV-positive grandson, says Kakande.

Not only is she scared, she’s also burdened financially. “She earns just 800 Ugandan shillings (less than a dollar) a day from selling sugarcane and struggles to pay the rent,” says Kakande.“They have only one meal a day. Sometimes Emmanuel takes his medicine just with water.”

ARVS on an empty stomach can cause nausea. Lack of food is listed as one reason why children don’t take drugs in the Young Lives study.

Other factors are not knowing the reason, fear of being seen by others, fear of being scolded, failure to meet expectations of adults, and loss of hope in life among children repeatedly ill.

The study concluded that adherence problems in children were commonly shaped by their social context and implicate their carers.

Waiting for a miracle

“One very, very common challenge” that this and other research ignore is the influence of Uganda’s born-again, Pentecostal churches, says Jacquelyne Alesi, programme director of the Uganda Network of Young People Living with HIV/AIDS.

“We’ve lost over 10 kids that way,” Alesi tells IPS. “They stopped asking for medicine because they believed they were going to be prayed for and they were going to be healed.”

Emmanuel has two more years until he officially learns that he has HIV.

“When we disclose their status, they [children] may segregate themselves,” says Kakande. “It’s our role to empower them. But for young positives, this is really very difficult.”

Dr Solomie Jebessa, a senior technical advisor at the African Network for Care of Children Affected by HIV/AIDS (ANECCA), says the consequences of children not taking their medicine properly can be fatal because the disease progresses much faster in children compared to adults.

“We’re losing a lot of children before getting them into the healthcare system,” she tells IPS.

Stigma can be equally, if not more devastating than the virus, says Dr Jebessa, who has worked with HIV-positive children in Uganda and Ethiopia.

From her experience, school clubs and activities where young people facing the same challenges can interact are crucial.

“There is a high need for organised psycho-social care in Africa,” she says. “A lot has to be done to make these kids comfortable at school and at the community level.”

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Many HIV positive teenagers struggle to disclose their status to their sexual partners. Credit: Mercedes Sayagues/IPS

By Wambi Michael
KAMPALA, Apr 8 2014 (IPS)

Silence is golden, it is said. But not for Constance Nansamba* from Uganda, who paid a dear price for keeping silent about being HIV positive and pregnant at age 18.  

“I was terrified. I ran away from my brother’s home. I could not follow the PMTCT [prevention of mother-to-child transmission] guidelines, so the baby is HIV positive,” she told IPS.“There are few designated adolescent-friendly outpatient health care facilities, while in-patient paediatric wards care for children up to age 12." -- Dr. Sabrina Kitaka, an adolescent health specialist

Nansamba knew she was born with the virus but, afraid of rejection, she did not tell her boyfriend. “We used a condom, he always complained, we abandoned the condom, I got pregnant.” Although he did not contract HIV from her, they broke up.

Nansamba, now 20, has found the courage to tell her story to help others. She is a member of Uganda Young Positives (UYP), an organisation that offers HIV counselling, testing and treatment adherence advice.

She told IPS that many teenagers born with HIV do not know their status when they start having sex, or they know but don’t tell their sex partners.

A survey by Uganda’s Mildmay Health Centre involving 200 adolescents receiving antiretroviral treatment found that 75 percent were not willing to disclose their HIV status to their sexual partners and 30 percent did not want to have protected sex.

“They simply don’t have information to guide them in negotiating disclosure, dual protection and consistent condom use,” said Nansamba. “I faced the same challenge because I would not discuss issues about sex with my elder brother, who was like my father.”

Nansamba’s parents died when she was a baby and her brother raised her.

HIV among the young

Uganda is a young country; nearly 80 percent of its 34 million people are below the age of 30.

National seroprevalence is 7.2 percent and, worryingly, is slowly rising. Among youth aged 15-24, five percent of women and two percent of men are HIV-positive, according to the Uganda AIDS Indicator Survey 2011.

The United Nations Children’s Fund’s Stocktaking Report on Children and AIDS 2013 estimates that Uganda has some 110,000 adolescents aged 10-19 living with HIV, of whom 64,000 are girls and 48,000 boys.

Emmanuel Elwanu was 14 years old when he learned that he had been born HIV positive. Fearing discrimination, he struggled with telling his HIV negative friends. “I had to go through a lot of counselling before I could open up,” he told IPS.

Elwanu was lucky: his school had weekly counselling sessions around HIV and he joined the Reach Out Mbuya Parish HIV/AIDS initiative.

“Many of my HIV positive colleagues out there are going through really difficult times with relationships,” explained the 18-year-old Elwanu. “I think about sex, but it is not my biggest priority.”

Elwanu, whose parents died while he was a child, has decided to abstain from sex until completing his studies.

Polly Nuwagaba, a counsellor with the Naguru Teenage Information and Health Centre in Kampala, told IPS that most adolescents have a problem with disclosure.

“They look healthy, they attract HIV negative partners, and they have sexual desires,” she explained. “Some tell us that when they say they have HIV, those they tell don’t believe it, and they end up having unprotected sex.”

No condoms for teens

Dr. Sabrina Kitaka, an adolescent health specialist at Makerere University’s College of Health and Sciences in Kampala, notes the gap in health services for the youth.

“There are few designated adolescent-friendly outpatient health care facilities, while in-patient paediatric wards care for children up to age 12. So adolescents are typically admitted to adult wards,” said Kitaka.

In 2013, the World Health Organisation (WHO) warned that the failure to put in place effective HIV services for youth has resulted in a 50 percent increase in AIDS-related deaths among adolescents globally, compared with the 30 percent decline of such deaths in the general population from 2005 to 2012.

WHO asked governments to review their laws to make it easier for adolescents to obtain HIV testing without parental consent.

But Ugandan health officials are divided on whether teenagers should be offered family planning services and condoms.

Dr. Stephen Watiti, a physician who lives with HIV, observed that the laws and policies surrounding condoms and contraceptives for adolescents in Uganda are unclear and interpreted inconsistently. This makes it difficult for both youth and health staff to understand their options.

Officially, only those 18 and over qualify for family planning services and condom distribution. However, more than half of young women aged 18-24 had had sex before the age of 18, according to the 2011 Uganda Demographic and Health Survey.

“As clinicians, you cannot go to schools and promote condoms or contraceptives. But when you come across a 14-year-old who is sexually active, then you have no option but to teach them how to use condoms,” Watiti told IPS.

At the UYP meeting held in Kampala, the Ugandan capital, in late January, Nansamba told the young audience: “You guys, it is not easy to live with HIV. You will always feel guilty whenever you sleep with someone, but at the same time you have sexual desires that need to be fulfilled.”

Her decision these days is “to abstain [from sex] because I don’t want to put anybody at risk of HIV.”

But for many HIV positive teenagers, abstaining is not an easy option – and neither is disclosing their status or practicing safe sex.

*Name changed to protect identity.

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Afraid of losing playmates, children hide their HIV positive status from their peers. Credit: Busani Bafana/IPS

By Busani Bafana
BULAWAYO, Apr 3 2014 (IPS)

Three years ago, Robert Ngwenya* and his father got into a heated argument over medication. Ngwenya, then aged 15, refused to continue swallowing the nausea-provoking pills he had been taking since he was 12 years old, and flushed them down the toilet. 

During the argument, Ngwenya understood he had been born HIV positive, had been taking antiretrovirals (ARV) and not vitamins and anti-allergenics, and that his father too lived with the virus and the guilt of having infected him.

“This is unfair, what did I do to deserve this?” Ngwenya laments.

Ngwenya lives in the high density suburb of Pumula in Bulawayo, Zimbabwe’s second city, with his father, a car mechanic, and his younger brother, who is HIV negative. His mother died when Nwengya was 10 and his father never remarried.

Ngwenya’s life was all planned: finish high school, get a degree in information technology, find a job and buy a car. Not any more. After the revelation, he is no longer the same outgoing teenager whose company brought smiles to friends and family.

“How do I tell my friends? How do I start a relationship knowing someone will have to carry my burden?” he asks.

Like Ngwenya’s father, other HIV positive parents, weighed down by guilt, find it hard to tell their children they were infected at birth.

How and who tells a child or teenager that they will live with the virus for the rest of their lives?

Hard choices

Thanks to ARV therapy, increasing numbers of HIV infected children are living to adolescence. In 2012, Zimbabwe had 180,000 children aged 0-15 and 1.2 million people aged 15 and above living with HIV, says the Joint United Nations Programme on HIV/AIDS (UNAIDS).

“As these children grow and surpass the immediate threat of death, the issue of informing them of their HIV status arises,” says a study on teenagers born with the virus in Zimbabwe.

Disclosing to adolescents is different from telling younger children and requires tailored, age-appropriate guidelines, says the study.

Adolescents aged 16-20 interviewed for the study preferred to be told by health care workers at clinics, with the presence of family.

“Disclosure to this age group in a healthcare setting may help overcome some of the barriers associated with caregivers disclosing in the home environment and make the HIV status seem more credible to an adolescent,” reports the study.

Zivai Mupambireyi, a researcher with the Centre for Sexual Health and HIV/AIDS Research (CeSHHAR) and co-author of a 2013 study of HIV positive children aged 11-13 in Zimbabwe, told IPS that children prefer to learn about their HIV status at the clinic because they believe health workers give them more and better information than their carers.

Children reported that their carers delayed disclosure, concealed information and lied about the pills.

“Most of these children were looked after by non-biological carers, as their parents were the first generation of AIDS patients and died before ARVs,” Mupambireyi explains.

Whether it is parents overwhelmed by guilt or carers distressed by the enormity of the revelation, telling adolescents they are HIV positive is fraught with pain and ambivalence.

Mupambireyi found that HIV positive children believe that disclosing to peers will expose them to discrimination. Although this often was not the case, fearing a loss of social interaction and friendship, children hide their HIV status.

“Although HIV status disclosure is noble and recommended, children’s concerns and fears around disclosure must be addressed before they are encouraged to disclose,” says Mupambireyi.

Health workers, parents and educators are tongue-tied as to the timing and best method of disclosing HIV status to youth.

Building trust

Definate Nhamo is the coordinator of Shaping the Health of Adolescents in Zimbabwe (SHAZ), a research and intervention project. One offshoot, SHAZ for Positives, reaches more than 700 youth living with HIV in Chitungwiza, a suburb of Harare, the capital.

Nhamo told IPS that the best age to disclose HIV status is probably around nine or 10 years, before puberty, and preferably in the presence of parents, guardians or a counsellor.

“When the child is younger, she is trusting, and will grow up knowing she must take the ARVs religiously,” says Nhamo.

SHAZ for Positives members agree that knowing their status early helps kids accept their condition and learn to be open about it, Nhamo told IPS.

Some adults tell children the ARV pills are for tuberculosis, without realising that children can google it. “Teenagers just stop taking their ARVs and do not tell their parents because they feel they are more informed since they have access to the internet,” observes Nhamo.

A young female participant in the SHAZ study, who did not want to be identified, tells IPS that her mother, distressed at having infected her, never told her the truth. At age 17, the girl took a routine HIV test and tested positive. Since she had never had sex, she confronted her mother and learned that her two siblings were HIV negative but she had been born positive.

“I was angry and frustrated. If my mother had told me earlier, I could have accepted my status better,” she says.

Zvandiri, meaning “what I am” in the Shona language, is a support group that helps adolescents deal with HIV.

In 2013, Zvandiri produced a catchy song and DVD, How to Dance, with cool young people spiritedly belting out their hopes and fears: “I too have dreams of a better life, that someone will love me as I am.”

They sing, “how to dance in the storm”.

* Not his real name

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