Ongoing Coverage:
Shots - Health News
2:20 am
Tue July 2, 2013

Myths And Stigma Stoke TB Epidemic In Tajikistan

Originally published on Tue July 2, 2013 9:51 am

Four-year-old Orion Qurbonaliev is lucky to be alive. Just last February, the little boy was lying comatose in the tuberculosis ward of a hospital in southern Tajikistan. The bacteria had spread to his spine and paralyzed the right side of his body. He was severely dehydrated and malnourished.

The staff on the government-run ward had run out of options for treating Orion. "They just left this kid to die," says Tina Martin, a nurse with Doctors Without Borders.

But Martin wouldn't accept that his case was hopeless. "We said, 'He doesn't have to die.' We'll fight and see what happens."

Martin pushed for an intense treatment at the hospital with antibiotics to fight the TB bacteria and steroids to reduce the inflammation around his spine.

Three months later Orion had recovered enough to return home.

Although TB is curable and relatively easy to prevent, it continues to be one of the most deadly infectious diseases in the developing world. It flourishes among the poorest of the poor.

Tight living quarters, inadequate health care and lack of knowledge all help stoke TB epidemics. Left untreated, tuberculosis can consume a person's lungs, spread throughout the body and eventually be fatal. But ventilation and simple infection control measures can significantly cut the transmission of the airborne bacteria.

Orion's family lives in a cluster of mud-walled houses outside the city of Vose, Tajikistan, near the Afghan border.

Cows are tethered in the dusty dirt yard. Turkeys, chickens and dogs wander through a whirlwind of children. When Martin comes to check on Orion, he's lying on a small mat on the porch of the main house.

Orion still can't walk or speak, but he's slowly regaining movement in the right side of his body.

He smiles broadly at Martin when she runs a stethoscope over his chest. "He's not malnourished anymore," she says. "He's still not speaking. He has some deficits. He needs a lot of rehabilitation, but he's actually doing a lot better."

The four-year-old boy has gained almost 10 pounds since Martin first met him in February.

Martin is now worried about the rest of Orion's family and wanders which ones may at risk of getting TB. Orion's older brother Higeron was recently hospitalized with the illness. The difficulty with treating tuberculosis is that it takes months of antibiotics, sometimes even years, to drive the bacteria out of a person's body. Orion's grandmother has been on and off TB treatment for years, and Martin has just confirmed that she still has active, infectious TB.

As Martin examines Orion, she tries to stress to the rest of the family that they need to take steps to limit the spread of the TB bacteria in their household: Cover a cough with your arm. Wash your hands. Open a window.

But Orion's grandmother, Kholbibi Abdulloeva, doesn't want to discuss this. Martin is about to run up against another major obstacle to eliminating TB everywhere, even in the U.S. — deeply held misunderstandings about how the disease is transmitted.

The grandmother insists that TB comes from the cold, and that Orion got it from swimming in the cold river.

"He likes fish," Abdulloeva says of her grandson. "So he was saying, "Fish, fish" and going to the river. That's why he got the TB."

Martin insists to the Abdulloeva that TB is spread through the air. The 66-year-old woman flatly dismisses the nurse's explanation. "No, its from cold," Abdulloeva says.

Orion's grandfather, Mahmadaly Qurbonaliev, next suggests that a local clergyman may have put a spell on the boy, and that's why he still cannot walk.

Younger members of Orion's vast extended family are more open to the idea that TB is an airborne infection. But they are still reluctant to talk about it.

It's shameful just to have a family member with TB, says Orion's cousin, Dilshod Ghazoev. "Even if they kill me, I'm not going to tell anyone that I have TB," the 22-year-old cousin says. "Because I'm going to be ashamed of that." People are scared of the disease and don't want to be around anyone who has it, Ghazoev says."If I have TB, I'll have less friends. People won't talk to me."

Tajikistan is the poorest country in Central Asia, and it has the highest rate of TB in the region. This is not a coincidence.

The country's clinics and hospitals are overcrowded and underfunded. The winters are bitterly cold, and families tend to crowd together in one heated room.

Nurses like Martin are doing their best to bring clear information to every village, but myth and superstition about TB persist. Some people even think the coughing and wasting away is a genetic condition, Martin says. "Father has TB, daughter has TB, granddaughter has TB — you can understand in a way why they believe it's genetic."

Shame may be the most powerful obstacle of all. A girl is shunned if she's had tuberculosis. She may have difficulties getting married later in life. "So they try to hide TB," Martin says. "We find that is a big problem."

Copyright 2013 NPR. To see more, visit http://www.npr.org/.

Transcript

DAVID GREENE, HOST:

Tuberculosis remains one of the most deadly infectious diseases in the developing world, even though it's relatively easy to prevent. Ventilation, sunlight and simple infection control measures can significantly cut the transmission of the airborne bacteria. But unfortunately, TB often spreads among the poorest of the poor, which makes it hard to suppress the disease.

As part of our ongoing series looking at TB around the world, NPR's Jason Beaubien recently traveled to the Central Asian nation of Tajikistan. There, he found an epidemic being stoked by a lack of adequate medical care, poverty and myth.

JASON BEAUBIEN, BYLINE: Earlier this year, four-year-old Orion Qurbonaliev was withering away in a tuberculosis ward in southern Tajikistan. TB meningitis had paralyzed the right side of his body. He weighed just 18 pounds.

Tina Martin, a nurse with Doctors Without Borders, says when she first saw the four-year-old in the hospital, he was dehydrated and severely malnourished.

TINA MARTIN: Before we arrived, limited resources being as they are and limited education, they kind of just left this kid to die.

BEAUBIEN: But Martin wouldn't accept that the boy's case was hopeless.

MARTIN: And we said he doesn't have to die. We can do things, and we'll fight and see what happens.

BEAUBIEN: She pushed for an intense treatment at the hospital with the correct antibiotics to fight the TB infection and steroids to reduce the inflammation around his spine. A few months later, Orion had returned home.

(SOUNDBITE OF A DOG BARKING)

BEAUBIEN: Orion's family lives in a cluster of mud-walled houses outside the southern Tajik city of Vose. Cows are tethered in the dusty dirt yard. Turkeys, chickens and dogs wander amongst a whirlwind of children. Orion is lying on a small mat on the porch of the main house. A white bird in a cage clucks and coos beside him.

(SOUNDBITE OF A BIRD)

BEAUBIEN: Orion still can't speak or walk, but he's slowly regaining movement in the right side of his body.

MARTIN: See, this is new. This tremor, he didn't have that before.

BEAUBIEN: Orion smiles broadly at Martin as she checks his chest with a stethoscope.

MARTIN: He's not malnourished anymore. He's still not speaking. He has some deficits. He needs a lot of rehabilitation, but he's actually doing much better.

BEAUBIEN: He's gained almost 10 pounds since she first met him earlier this year. But Martin is now worried about the rest of the family, and who else may have TB. Orion's older brother Higeron was recently hospitalized with TB. The grandmother has been off and on TB treatment for years. And Martin has just confirmed that the matriarch still has active, infectious TB.

Talking to a group of family members who've gathered around Orion on the porch, Martin tries to stress that the whole family should get screened for the disease.

MARTIN: So we're concerned because what illness they have can be transmitted. So you can share the infection.

UNIDENTIFIED MAN: (Foreign language spoken)

BEAUBIEN: And she says that anyone who has TB should sleep in a separate bedroom. But Orion's grandmother, Kholbibi Abdulloeva, doesn't want to talk about this. She insists that TB comes from the river, and she's told all the kids repeatedly, including Orion, to stay away from the cold water.

KHOLBIBI ABDULLOEVA: (Foreign language spoken)

UNIDENTIFIED MAN: He likes fish. So he was saying, fish, fish, and he would go into the river. That's why he got the TB.

MARTIN: So TB is not spread through cold water.

ABDULLOEVA: (Foreign language spoken)

UNIDENTIFIED MAN: She says no, it's from cold.

ABDULLOEVA: (Foreign language spoken)

UNIDENTIFIED MAN: She says even me myself, I got it from cold.

MARTIN: So we worry because there are other people in the family coughing. And we ask about coughing all the time.

BEAUBIEN: As Martin tries to explain again, that TB is transmitted through the air, one of Orion's aunts shows up and joins the grandmother in arguing against this scientific fact.

UNIDENTIFIED WOMAN: (Foreign language spoken)

UNIDENTIFIED MAN: So still, they still don't believe that it's through cough because she says she has the TB for six, seven years and Orion just got it recently. So it's been seven years, only Orion got it.

MARTIN: And Higeron got it.

ABDULLOEVA: (Foreign language spoken)

UNIDENTIFIED WOMAN: (Foreign language spoken)

UNIDENTIFIED MAN: Higeron got it because in the evening he went to the river and he was swimming.

ABDULLOEVA: (Foreign language spoken)

UNIDENTIFIED MAN: The water is the reason.

BEAUBIEN: Martin says she's very concerned about this family.

MARTIN: This is a very close family. They live together. They eat together. They sleep together. And as TB is airborne transmission, the family is re-infecting each other over and over again.

BEAUBIEN: Another difficulty in tackling TB here in Tajikistan is that people who have it are shunned. One of Orion's cousins, 22-year-old Dilshod Ghazoev, says it's shameful even to have a family member with tuberculosis.

DILSHOD GHAZOEV: (Foreign language spoken)

UNIDENTIFIED MAN: So he says Even if they kill me, if I have TB, I'm not going to tell anyone that I have TB, because I'm going to be ashamed of that.

BEAUBIEN: Ghazoev says people are scared of the disease and don't want to be around anyone who has it.

GHAZOEV: (Foreign language spoken)

UNIDENTIFIED MAN: So, he says if I have TB, then I'll have less friends and people won't talk to me. And, for example, their parents are going to talk to their kids that don't hang out with that guy or don't eat food with him.

BEAUBIEN: Left untreated, tuberculosis can consume a person's lungs, spread through out the body and eventually be fatal. The difficulty with treating TB is that it takes months of antibiotics - sometimes even years - to drive the bacteria out of a person's body.

Tajikistan is the poorest country in Central Asia and it has the highest rate of tuberculosis in the region. This is not a coincidence.

The country's clinics and hospitals are overcrowded and under-funded. The winters are bitterly cold and families tend to crowd together in one room. There's a lack of education about the disease. Some people even think the coughing and wasting away is a genetic condition.

MARTIN: Because it impacts families. So father has TB, daughter has TB, granddaughter has TB. So you can understand in a way that they believe it is genetic. And so that actually has huge impacts on the ability of a child to get married later in life. So they try to hide TB. So we find that is a big problem.

BEAUBIEN: And containing a potentially, deadly airborne disease, when no one wants to admit they have it, is nearly impossible.

Jason Beaubien, NPR News.

(SOUNDBITE OF MUSIC)

GREENE: And Jason's reporting on Tajikistan will continue. Later today on ALL THINGS CONSIDERED, he'll examine the special problems presented by children with TB in that country. Transcript provided by NPR, Copyright NPR.

Related program: