Africa, Children on the Frontline, Development & Aid, Headlines, Health, Human Rights

HEALTH-SWAZILAND: On ART Since Birth

Mantoe Phakathi

NHLANGANO, Swaziland, Nov 16 2009 (IPS) - Seven-year-old Ntombi* frowns after swallowing the tablets her grandmother has given her. The HIV-positive child has contracted multi-drug-resistant tuberculosis (MDR-TB).

So along with her antiretroviral therapy (ART) of eight tablets every morning at 7 am, she also has to take an injection for the MDR-TB. But it seems she is still not used to her medical regime.

Ntombi lives in Nhlangano in the southern part of Swaziland with her grandmother, as her mother, a domestic worker, left her with her paternal family. Ntombi’s mother could not let her live with her at her place of employment because she is HIV positive and needs treatment and care. Ntombi has been on ART since she was six months old, soon after her father died from an AIDS-related illness.

Three years later she contracted TB, and six months ago she was diagnosed with MDR-TB. She has been on MDR-TB drugs for six months after developing the TB strain a year ago. It has not been easy for a Ntombi who also has to suffer an injection every day as part of MDR-TB treatment. “She used to vomit a lot after taking the medication, but she stopped throwing up two weeks ago,” said Zodwa Methula*, Ntombi’s grandmother, who is also her caregiver. “Now she is suffering from diarrhoea.”

Ntombi also sometimes suffers abdominal pains, fatigue, joint pains and headaches. But the elderly woman is not panicking, and says Ntombi’s doctor from Nhlangano Health Centre told her she would suffer from such side effects because of the drugs.

The side effects are not the only challenge for Methula. She helps her granddaughter to swallow the tablets and also injects her as part of the MDR treatment, and feels pain everytime the little girl complains that the drugs are bitter and the injection painful. “Although I do understand how difficult it is for her to take this treatment, I always tell her it’s for the best,” said Methula.

Ntombi, who had to drop out of pre-school last year after her illness got worse, is not the only child in this predicament. According to the director of the National Emergency Response Council on HIV/AIDS (NERCHA), Dr Derrick von Wissel, out of 43,000 people on ARVs, 10 percent are children.

A startling 26 percent of the kingdom’s adult population are infected with HIV, and of these 80 percent are co-infected with TB. Some of the children on ARVs also have TB, and have to take medicine for this opportunistic disease together with the ARVs. This means these children have to take a greater number of drugs, making the side effects much worse. “In the past couple of years when HIV/AIDS started, there was never any thought about the treatment of children,” said Dr Joyce Mareverwa, medical director at the Baylor College of Medicine-Bristol Meyers Squibb Children’s Clinical Centre of Excellence-Swaziland.

But, she said, in 2006 the country began receiving syrups – mainly for children under five. “We would split, crush tablets and mix with water meant for adults to give to the children. It wasn’t good quality, but better than nothing,” said Mareverwa. “Taste was never considered because infants tend not to have a good sense of taste.”

Although syrups are much better for children to swallow than tablets, they present challenges to some of the caregivers, especially the grandmothers, because they find it difficult to measure properly. The elderly find it difficult to read the measurements for the different syrups which they have to mix for the young patients.

The pharmaceutical companies, said Mareverwa, had come up with water-dispersible tablets in a fixed-dose combination for children under five. This intervention started last year.

“These tablets are easy to swallow for the children, because they can be dissolved in a small amount of water like a teaspoon. They are also bitter, but can be followed up with juice,” she said.

Children older than five still have to depend on the drugs for adults, but their treatment supporters which could be their parents or guardians, have to split the dosage according to their body weight. ARVs and TB treatment are confusing to many children, because most of them do not even know why they have to take the medicine. Some parents and guardians do not disclose the children’s HIV status to the young ones because of fear of stigma and discrimination.

“Kids can be difficult if they are forced to take treatment, especially life-long, without any explanation,” Mareverwa said. “But we’re facing a big challenge because parents do not want to come out, and if they tell the children about their status, they fear the kids will tell other people.” In fact, treating children living with HIV and TB is a much bigger challenge, because they depend on their parents and guardians to make crucial decisions on their health.

Joyce Sibanda, a nurse from the Medicines Sans Frontiers (MSF), an international non-governmental organisation working on the response to TB and HIV in the Shiselweni region, and who is based at Nhlangano Health Centre, said some parents saw their children were getting better, and discontinued the treatment – much against the health practitioner’s advice.

“Children also can’t come to the hospital on their own, and if their parents or guardians do not bring them, they can’t access treatment,” said Sibanda.

For example, Ntombi’s grandmother told IPS she could not bring the little girl to the health centre every day for injection, although MSF provided her family with transport fees.

“Right now it’s time for cultivation, which means I have to work at the fields. I don’t have time to travel to the hospital every day,” Methula said. “The doctor made an arrangement that I should inject her (Ntombi) at home.”

Sibanda said the problem with treating children started from diagnosis, because the young ones failed to articulate on the symptoms of whatever opportunistic disease was affecting them.

But Methula is very happy that her granddaughter is now much more energetic, and she is considering taking her back to pre-school next year, thanks to the treatment.

*Names have been changed to protect the identity of the minor.