The world is struggling to cope with a growing epidemic of drug-resistant tuberculosis. Treatment is even more complicated for children.
TB drugs aren't usually designed for kids, says Dr. Christoph Hoehn the acting country director for Doctors Without Borders in Tajikistan. That means they aren't packaged in smaller doses, and may not even have been tested for child-specific effectiveness or side effects. "Almost all the drugs we want to use do not exist in child-friendly formulations," he says.
Hoehn and his colleagues have been running a pilot project in Tajikistan since 2011 to treat children with drug-resistant TB. Team members often find themselves mixing the powder into a suspension or syrup.
But curing a regular TB infection requires about six months of treatment, with kids taking at least four medications a day. For drug-resistant TB, the regimen lasts longer — two to three years — and kids often need daily injections of antibiotics.
"We wouldn't do that in the West," Hoehn says. "Children would get some central intravenous catheter, and [the daily doses] would be much less painful. But we cannot do that here. We don't have the means, so it must be done in"to the muscle, the gluteus muscle."
The limited offering of TB drugs in Tajikistan nearly killed 4-year-old Ruqiya Hasanova.
Soon after the little girl arrived at a government-run tuberculosis hospital, she started developing a full body rash. The doctors suspected measles.
Eventually a nurse from Doctors Without Borders determined that Ruqiya was having a severe allergic reaction to rifampicin, one of the primary antibiotics to fight TB.
They stopped Ruqiya's anti-TB regimen, and the rash immediately went away. In Tajikistan, rifampicin comes only in a pill combined with another TB medication. So she couldn't take either drug. And just like that, two of the main drugs in the meager TB arsenal became unavailable to Ruqiya. In the end, Doctors Without Borders had to special-order different meds for her from Europe.
But now it's unclear if even these are working.
Earlier this spring Ruqiya's cough, fever and night sweats returned. Andy Martin, a nurse with Doctors Without Borders, says he's now worried that Ruqiya may have drug-resistant TB. Nailing that down isn't easy, but is crucial. If her infection is drug-resistant, she's on the wrong drugs.
Children tend to have fewer TB bacteria in their lungs than adults. And it's hard to get kids to cough up mucus from deep inside their lungs, where the TB bacteria live.
"If we can get some of the TB bacteria, we'll be able to tell if she's drug resistant or not," Martin says.
After about 20 minutes of trying to get Ruqiya to cough up the mucus, Martin decides that they need to insert a catheter into the little girl's nose to get the sample. Ruqiya screams and fights against the nurses as they slide the catheter into her nostril.
The nasal catheter procedure isn't extremely painful, Martin says, but it's scary for children. "I think all the young children will cry during this procedure," he says. "It is very difficult, but you weigh this procedure against the progression of the disease and [the futility of treating] children with the wrong regimen."
This sample of mucus from the lungs should allow Martin to tell whether Ruqiya needs to be switched to an entirely new regimen of far more toxic TB drugs. Left untreated, an active TB infection such as Ruqiya's can destroy her lungs, spread throughout her body and eventually kill her.
But the treatment itself also can have intense side effects, including nausea, joint pain, headaches and insomnia. Another common side-effect is hearing loss.
Eighteen-year-old Rosigul Shaimurdova has been battling drug-resistant TB for more than two years. Her current medication has left her permanently deaf.
Drug-resistant TB forces patients to make awful choices, Terry Porsild, from Doctors Without Borders, says. " 'Would you rather have hearing loss, or would you rather die?' To put it very bluntly."
Shaimurdova lives with her mother and more than a dozen extended family members in a small flat in a mildewed, Soviet-era apartment block.
TB has taken over her life. She dropped out of school. She doesn't sleep at night and is irritable during the day, her sister says. As Shaimurdova's health has fluctuated, she's been in and out of the hospital.
During her most recent stay, Shaimurdova says that she had pain throughout her body, and the disease sapped all her strength.
"It was very hard for me," she says. "I couldn't get up and walk. I felt like my bones were boiling in water."
Shaimurdova is home now. She takes 14 pills a day, plus one injection to combat TB. Her condition appears to be improving. Her doctors say that she'll never regain her hearing, but they expect she'll be able to beat the TB infection.
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Tuberculosis affects about 9 million people and causes one and a half million deaths around the globe every year. That's according to the World Health Organization. We've been covering this problem in an ongoing series. And today, we report on the issue of treating TB in children.
Tuberculosis is difficult to diagnose in children and the tools to confront it are limited. To see the challenges of treating pediatric TB firsthand, NPR's Jason Beaubien went to the Central Asian nation of Tajikistan.
JASON BEAUBIEN, BYLINE: Four-year-old Ruqiya Hasanova is battling TB, and things aren't going well. Her aunt, Firuza, says earlier this year Ruqiya seemed to have a cold, a bad cold with a cough that wouldn't go away. Firuza says the whole family was very worried about her.
FIRUZA: (Through translator) We got really scared because even the temperature was 39, 40 degrees Celsius.
BEAUBIEN: That's a fever pushing 104 degrees Fahrenheit. Ruqiya was diagnosed with TB and admitted to a government-run tuberculosis hospital in the southern Tajik city of Kulob.
But soon after starting treatment, she developed a full body rash. The doctors suspected measles. A nurse from Doctors Without Borders, however, determined that Ruqiya was having an allergic reaction to one of the main TB drugs. In the end, Doctors Without Borders had to special order TB meds for her from Europe. But now, it's unclear if even these are working.
UNIDENTIFIED WOMAN: (Foreign language spoken)
BEAUBIEN: Her cough, fever and night sweats have recently returned. A team from Doctors Without Borders is at Ruqiya's simple house in southern Tajikistan. Under a mulberry tree, inside the family's mud-walled compound, the medical team led by nurse Andy Martin is trying to get a mucous sample from the 4-year-old.
ANDY MARTIN: If we can get some of the TB bacilli, then we'll be able to tell if she's drug resistant or not.
BEAUBIEN: This is crucial because if she is drug resistant, then her current medicines are useless. But it's hard to diagnose any kind of TB in children. They tend to have fewer bacteria in their lungs than adults, and it's hard to get kids to cough up phlegm into a vial. After about 20 minutes, Martin decides that they need to insert a catheter into Ruqiya's nose to get the sample. He guides one of the other local nurses through the process.
MARTIN: If you hold it like this...
UNIDENTIFIED MAN: (Foreign language spoken)
MARTIN: ...very gently, it should go in without any resistance. Don't force it.
BEAUBIEN: Ruqiya starts crying as soon as she sees the thin, clear medical tube. She fights the nurses as they try to slide it into her nostril.
(SOUNDBITE OF CRYING)
BEAUBIEN: Martin says the procedure isn't extremely painful, but it is scary for children.
MARTIN: I think that pretty much all the young children will cry during this procedure, yeah. It is very difficult. But you weigh this procedure against the progression of the disease and also trying to treat children with the wrong regimen.
BEAUBIEN: This is the only way to tell whether Ruqiya needs to be switched to an entirely new regimen of far more toxic TB drugs. Left untreated, an active TB infection such as Ruqiya's can destroy her lungs, spread throughout her body and eventually kill her. It was late in 2011 when Doctors Without Borders started treating kids with drug-resistant TB in Tajikistan.
DR. CHRISTOPH HOEHN: Because the country was initially not treating it in children.
BEAUBIEN: Dr. Christoph Hoehn is the acting country director for Doctors Without Borders in Tajikistan. Tajikistan wasn't treating for several reasons. First, the country couldn't even deal with all the adults who needed treatment. Also, many Tajik health workers believe falsely that drug resistance comes only after a patient fails a course of medication, thus it's unlikely that a kid would have the drug-resistant form. But it's now been shown that the drug resistant strain of TB can spread directly through the air. And then Tajikistan also has the problem facing much of the rest of the developing world: a lack of TB drugs for children.
HOEHN: Almost all the drugs we want to use do not exist in child-friendly formulations. If you want to dose the drug according to the body weight of the child, it will always be only a rough estimate.
BEAUBIEN: Doctors Without Borders makes their own pediatric TB treatments by crushing adult pills and then mixing the powder into a suspension or syrup. This allows them to more tightly control how much active ingredient is being given in each dose. But TB treatment requires a minimum of six months with patients taking at least four drugs a day. Crushing and mixing and measuring all those medications for anything more than a handful of kids becomes a daunting task. And treatment for drug-resistant TB is even more complicated, involving more pills plus daily injections.
HOEHN: We wouldn't do that in the West. Children would get some central intravenous catheter.
BEAUBIEN: A needle implanted under the skin for months at a time.
HOEHN: And it would be much less painful. But we can not do that here. We do not have the means, so it has be done into the muscle, into the gluteal muscle.
BEAUBIEN: Besides the discomfort, the drugs to treat drug-resistant TB can have intense side effects including nausea, joint pain, headaches, insomnia and hearing loss.
UNIDENTIFIED WOMAN: (Foreign language spoken)
ROSIGUL SHAIMURDOVA: (Foreign language spoken)
UNIDENTIFIED WOMAN: (Foreign language spoken)
SHAIMURDOVA: (Foreign language spoken)
BEAUBIEN: Eighteen-year-old Rosigul Shaimurdova has been battling drug-resistant TB for more than two years. Her current medication has left her permanently deaf. The teenager lives with her mother and more than a dozen extended family members in a small flat in a mildewed Soviet-era apartment block. Shaimurdova's health is improving, but she says often her lungs and heart feel weak.
SHAIMURDOVA: (Through translator) My heart works quick. I feel like I'm choking. I have difficulties with breathing.
BEAUBIEN: TB has taken over Shaimurdova's life. She dropped out of school. She's been in and out of the hospital. She doesn't sleep at night. And her sister says she's irritable during the day. Shaimurdova says the last time she was hospitalized she had pain throughout her body and the disease sapped all her strength.
SHAIMURDOVA: (Through translator) It was very hard for me. I couldn't get up and walk. I felt like my bones were boiling in water.
BEAUBIEN: Shaimurdova is home now. She takes 14 pills a day plus one injection to combat TB. Her condition appears to be improving, and her doctors say that although she'll never regain her hearing, they expect she'll be able to beat the TB infection. The still unanswered question is how she got tuberculosis and whether any of the other children living in her small apartment are also going to have to go through the grueling task of battling TB in Tajikistan. Jason Beaubien, NPR News. Transcript provided by NPR, Copyright NPR.