The story of Rochelle Phillips

Multidrug-resistant TB is not child’s play

Written by Kim Cloete:

IT’S BEEN a long and lonely journey for 11-year-old Rochelle Phillips to fight multidrug resistant tuberculosis (MDR-TB). But after 18 months of strict medication, and months in hospital, she has won the battle.

The doctors who have treated her since her arrival in 2010, barely alive with both lungs affected by MDR-TB and one of them collapsed, have given her the green light. “She was very sick. Her lungs were severely affected. Miraculously, she’s pulled through,” said Professor Simon Schaaf, paediatrician and MDR-TB expert at Stellenbosch University’s Desmond Tutu TB Centre.

MDR-TB occurs when a patient is infected with a TB strain that is resistant to the drugs used to treat regular TB. Children usually contract MDR-TB from someone with whom they spend a lot of time, and in Rochelle’s case, her older brother had it.

Childhood MDR-TB is on the rise in the Western Cape, according to Schaaf, with about 8 percent of children admitted to Tygerberg Children’s Hospital with suspected TB having full MDR-TB. Children are a litmus test of what’s going on in the community – and we see that there’s often a big delay in getting adults on to therapy for MDR-TB. That time lapse exposes more children to it,” he said.

Life-saving medication is available to treat MDR-TB, but it’s expensive, has side-effects, and is not child-friendly. Dr Anneke Hesseling, director of paediatric research at the Desmond Tutu TB Centre, said existing drugs were definitely not designed for children. “The (existing) pills are big, difficult to swallow, can make you very nauseous and taste horrible.”

This made things particularly difficult for babies and young children. The pills have to be cut up and crushed, then given to children with yoghurt to make them more palatable. The daily injections needed to cure MDR-TB during the first six months of treatment are also painful.

Schaaf said this resulted in children and adolescents commonly defaulting on their treatment – with potentially devastating effects as, if left untreated, a child can die from the effects of MDR-TB. Children often have to be hospitalised for months.

Rochelle spent three months of her recuperation in an isolation ward at Tygerberg Children’s Hospital, which was essential to prevent the spread of the organism. But it was a lonely time for her: And out of sheer frustration, she plugged up the basin and flooded her hospital room twice. Angry with the television set as sole company, she ripped it off the table. “Isolation is sometimes the only way, as MDR-TB can be easily transmitted, particularly when there’s poor ventilation. But it must have been very frustrating for her,” Schaaf said.

Concerned about the long stints in hospital, and the type of treatment for children, Schaaf and his team at the centre are on a quest to try to advance research in the area. Despite global research, the same drugs have been in use for years.

Hesseling explained that children with MDR-TB usually take five to seven different drugs. Children are often transferred from Tygerberg Children’s Hospital to the Brooklyn Chest Hospital while they undergo treatment, usually for around six months, and the Desmond Tutu TB Centre is conducting a potentially groundbreaking study here.

The team will monitor 200 children over the next five years. “We’re looking at what dose we should be giving the children, the side-effects of the cocktail of drugs children need to take, and the interaction between antiretrovirals and TB,” explained Schaaf.

Stellenbosch University is working with UCT on the trials. Hesseling and Schaaf are also keeping up to speed with three global trials testing new TB drugs in adults. “If you can cure TB in adults, then it should be just as effective for children,” Hesseling said.

A critical aspect of the current treatment that worries Schaaf is that more than one-fifth of children treated for MDR-TB become hard of hearing. Schaaf hopes the new trials will limit the side-effects and lead to change. “After 50 years of silence, there may be new TB drugs and, at least, a better outcome for children.”