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ROBERT SIEGEL, HOST:

And I'm Robert Siegel.

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.

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