Tuberculosis (TB)

A race to save lives

ALMATY, Kazakhstan – Through the centuries, great powers have fought in this region over influence and resources, such as the modern scramble for vast energy supplies buried in Central Asian earth. But now an echo of those races is being waged here almost entirely out of view, one with thousands of lives at stake – the struggle to control both multidrug-resistant tuberculosis (MDR -TB ) and the more serious extensively drug-resistant TB, or XDR -TB .

Daniyar Tapalov walks to his home in Dalgar, Kazakhstan, after receiving medicine at a nearby hospital for MDR-TB.
WHO/Dominic Chavez
Daniyar Tapalov walks to his home in Dalgar, Kazakhstan, after receiving medicine at a nearby hospital for MDR-TB.

Nowhere in the world have drug-resistant strains of TB been known to have gained such a foothold as in the former Soviet states. And perhaps nowhere along the southern rim of former Soviet states has a country fought back like Kazakhstan, the ninth largest country in the world.

Its public health system, still trying to strengthen basic TB control across varied environments and populations, is working on several fronts to stop transmission of drug-resistant strains, which can be easily spread in enclosed areas on the wings of a cough or sneeze. The tubercle bacilli is a wily opponent. It has exploited multiple opportunities – economic meltdowns, social breakdowns, even the handiwork of ghosts from Soviet times.

Inside hospital rooms, the spread of the TB bug is painfully evident: Here lay young girls infected by mothers; prisoners infected by prisoners; border guards infected by migrants; train workers by passengers; and orchestra musicians by other musicians.

“At first I cried when I heard the news,” said Zhuldyz Zhabelova, speaking in Russian through a mask and lying on one of the five beds in a room at one TB hospital in Almaty, which she shared with four other young female MDR-TB patients.

Zhabelova, a 27-year-old former soloist in the Kazakhstan Philharmonic Orchestra, used to play the two-string dombra – a slender-necked lute with an oval body first cherished by nomads along the Silk Road. In early 2008, she became ill with a fever and a wracking cough; tests determined she had TB, and further laboratory tests found it was MDRTB. She learnt that she might have caught the disease while playing the dombra; a friend, who sat near her in the orchestra, unknowingly was infected with MDR-TB.

“After my diagnosis, a doctor explained to me that it was curable,” she said. “So I try to be calm. Sometimes it is hard.”

For TB patients, hard in Kazakhstan can be especially hard: Those who contract pulmonary TB in Almaty, the country’s largest city, have a one-in- four chance that their Mycobacterium tuberculosis will be resistant to at least two of the most commonly used drugs as well as some secondline medications. That means they must take a combination of harsh medication daily for 18 to 24 months in hopes of being cured.

Such rates of drug-resistant TB are an astounding five times greater than the global average. Almaty is not alone – not among some of the former republics of the Soviet Union. In 2008, the World Health Organization (WHO) and national counterparts that conducted representative surveys found sky-high rates of MDR-TB among all new TB cases across the region: 22.3% in Baku, Azerbaijan; 19% in the Republic of Moldova; and 16 in Donetsk, Ukraine, among others. Since that report, some of the other surveys in the region have shown even more alarming rates, including 27.7% of new TB cases in Kyrgyzstan’s prisons in 2007–2008; 26% in Almaty city; and 20% nationwide in Kazakhstan (up from 14%, according to a WHO estimate based on a 2004 survey).

And yet, in Kazakhstan, the numbers don’t reflect progress in the fight: The Government, showing a serious political and financial commitment to battle the disease, more than doubled the national TB control budget in five years, to US$ 125 million in 2008 from US$ 58.3 million in 2003. International experts are helping, and a panel in Almaty now reviews all MDR-TB cases in the city every three months. Some early results have been encouraging: One Almaty hospital, for instance, reported an 80% cure rate of MDR-TB patients in 2008.

Still, MDR-TB rages, in part because of the ghosts – the legacy of Soviet rule and especially its breakup.

Experts believe the spread of drug-resistant TB really accelerated years later, following the collapse of the Soviet Union in 1991. Health systems began to fail. Many TB patients stopped taking drugs because supplies often ran out. The TB incidence rate rose to 119 people out of every 100,000 in 1998, up from 66 per 100,000 population in 1990. Over those eight years, the country’s TB death rate nearly quadrupled – a reflection, experts say, of the spread of infection but also improved data collection and diagnostic tools.

Since 1998, numbers of TB deaths have been halved; officials say the turnaround began with President Nursultan Nazarbayev’s 1998 decree to follow WHO’s recommendation to implement DOTS, the basic package that underpins the Stop TB Strategy. That decree, Kazakh officials claim, has helped save 30,000 lives during the past decade.

At the end of 2008, the country was treating 36,000 patients for TB and 2,000 for MDR-TB. The cost of treating MDR-TB patients was more than 10 times higher than that of treating TB, averaging more than US$ 4,000 per patient.

Management of MDR-TB has a long way to go. Government figures showed that 1856 registered MDR-TB patients at the end of 2008 were not being treated mostly because the drugs weren’t available. That situation could improve soon. In 2008, the Global Fund to Fight AIDS, Tuberculosis and Malaria approved a US$ 69 million, five-year grant that will fund more second-line drug treatment for MDR-TB patients, said Dr Arman Toktabayanov, project manager of the Global Fund initiatives in Kazakhstan. (The country, in 2007, also received a US$ 9.8 million, five-year Global Fund grant to fight TB.) “We’re trying to find the solutions – we’re fighting,” Toktabayanov said.

Dimitry Gagarin lays his apple next to his TV after lunch at the National TB Center in Almaty, Kazakhstan.
WHO/Dominic Chavez
Dimitry Gagarin lays his apple next to his TV after lunch at the National TB Center in Almaty, Kazakhstan. He is co-infected with HIV and MDR-TB. “I am waiting to see which one will kill me.”

One troublesome area remains inside prisons, run by the Ministry of Justice, which is now starting to expand laboratory diagnostic services, train health-care workers and improve patient care services. Still, say health officials, while basic TB control has improved in prisons, it remains substandard.

Dimitriy Gagarin, aged 33, laments that. While serving time at the Chimkent prison in south Kazakhstan from 2004 to 2007 for illegal drug use, he contracted TB. Years earlier, he had been diagnosed with HIV – now he was living with two deadly infections. In prison, Gagarin was locked in a large cell block with 127 other prisoners. “No one talked about TB in there – no one cared,” he said. “It was very easy to get TB. It was like being on a crowded train or bus, all the time.”

A prison doctor started treating him for TB with a four-drug regimen, but Gagarin said the prison sometimes ran out of the drugs. Only a few months after finishing his six-month treatment, Gagarin became sick again – this time with MDR-TB.

After one year of treatment at the national TB control center in Almaty, he was feeling better. “But I have two diseases – MDR-TB and HIV – that are very dangerous,” he said. “It’s like I have sticks of dynamite in my body. I’m waiting to see which one will kill me.”

The TB wards are full of such stories of loss and fear and anger. Mukusheva Orynsha, a 51-year-old nurse from western Kazakhstan, contracted MDR-TB from one of her patients. She railed against the poorquality diagnostic tests; it took three months to learn she had MDR-TB, which meant that during those three months she was taking drugs that were ineffective. “It was such a waste of time,” she said, tears filling her eyes. “I’m angry not only for me, but for a lot of people. Wasting three months is not fair – and it’s dangerous.”

But some accept what has happened to them – even in extraordinarily difficult circumstances. Zulfiya Tursunova, 20 years old, gave birth to a girl, Samera, in 2007, only to learn months later that she had TB. Since entering the hospital in mid-2008, she had seen Samera just once – and then from 30 feet away.

Her girl was inside a car, the window rolled up. Tursunova stood on her hospital balcony and waved. “She recognized me,” the mother said. “I know because her eyes lit up.”

“It is very hard to be apart,” she added, “but I know I must be really careful.”

For another patient, a former army border guard who identified himself only as Beibut, contracting the illness has had numerous ripple effects in his life. His wife divorced him, and he asked his relatives not to visit. “I’m so ashamed that I am sick,” he said.

But days later, the 29-year-old Beibut’s mood lifted. Doctors told him he was no longer infectious and that he might be discharged from the hospital in only a few months.

So he decided to do the one thing that would make him happy: for his son, Zharaz, to see him at the hospital. Zharaz had something to celebrate – his third birthday – and his father had something to celebrate as well: feeling well again. And he could finally think about getting back his old life.