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Lives Lost

RUSSIA


RUSSIA'S LAMENT: A patient lies in the Vladimir Tuberculosis Clinic. Russia's rate of TB infection is more than 11 times that of the United States.

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'TB is not a medical problem. It is one of economics and organization.'

By David Filipov, Globe Staff
Photos by Evan Richman, Globe Staff

VLADIMIR, Russia -- Nikolai Bogdanov hobbled painfully down the dark, moldy corridor of the tuberculosis ward, through the thick clouds of cigarette smoke, past dozens of men in flannel shirts, jeans, and slippers, many of them with faces as gaunt and sallow as his own.

   


RUSSIA: AT A GLANCE

An estimated 700,000 Russians were living with HIV/AIDS at the end of 2001, about 70% of all cases in Eastern Europe and Central Asia.

Safe water 90%
Population with access

Health care spending $92
Per capita, 2000

Physicians 421
Per 100,000 population, 1998

Source: World Health Organization; USAID
Graphic: Globe Staff


This section launches a yearlong effort by the Globe that will feature stories on world health challenges and the solutions that are within reach.

INTERACTIVE OVERVIEW
This special guide tells the story of people who should have lived, but didn't, in the words and pictures of the reporters and photographers who documented the daily struggle of so many to stay well -- and stay alive. See overview

CHALLENGES AND CURES

Most deaths from AIDS, malaria, tuberculosis, and childhood diseases can be prevented or cured with simple and affordable measures, but only 25 percent of those at risk are getting that help.
Lives Lost maps: Challenges and cures

STORIES

Introduction   Story
None of them had to die

CAMBODIA   Story
'The real killers are poverty, ignorance, fear, and corruption. Disease just administers the coup de grace.'

MALAWI   Story
'I'm one of six children. I'm the only one left.'

RUSSIA   Story
'TB is not a medical problem. It is one of economics and organization.'

GUATEMALA   Story
'He could die. One infection, and he could die.'

ZAMBIA   Story
'You can't give up on these patients. There are simple things you can do for them.'

HOW YOU CAN HELP
Details on global health concerns and projects and a list of charitable and non-profit organizations that are working on world health. See resources

REACTION

Chat transcript: On Monday, January 27, Globe reporter John Donnelly chatted with Boston.com users about the Lives Lost series and issues in world health. Read transcript

Message board: Boston.com users share their reactions to this report.   Responses

CONTACT US
E-mail the Globe reporters and photographers who worked on this report.

Cambodia
Reporter: Colin Nickerson
Photographer: Michele McDonald

Malawi and Zambia
Reporter: John Donnelly
Photographer: Dominic Chavez

Russia
Reporter: David Filipov
Photographer: Evan Richman

Guatemala
Reporter: Raja Mishra
Photographer: Essdras Suarez

Once in his doctor's office on that chill November day, Bogdanov sat deferentially on the edge of the couch and spoke in a frail voice about his worst mistake, one that has made him a symbol of how Russia's TB epidemic has become so intractable and so dangerous. It was a mistake that cost him his life.

Bogdanov recalled how in April the nightly fevers had returned -- a sign that he had suffered a relapse of the tuberculosis he contracted in 1997 while hospitalized with a pancreatic infection. The doctors in Vladimir, an industrial city about 100 miles east of Moscow, wanted to hospitalize him right away, but the 38-year-old electrician refused to go.

Bogdanov had been making ends meet however he could since the end of communism brought economic uncertainty along with more personal freedoms in this country. The old system promised ordinary workers little, but it did guarantee a job, a place to live, and cradle-to-grave medical care. Now, he had a family to take care of. And he had to pay $15 a month -- half of his unemployment and health benefits -- for the private school that his pride and joy, his gifted 11-year-old daughter, Nastya, attended.

"I decided to take on work to put clothes on my kids," Bogdanov said in his low, quavering voice. "You see, I have no close relatives, no one else to take care of them if something happens to me."

His voice tailed off. Bogdanov turned away and coughed discreetly into his cupped fists to avoid passing on his personal death sentence -- multi-drug-resistant tuberculosis, all but incurable for someone in such a weakened state -- to his visitor, who wore a protective mask, and his doctor, who did not. The doctors rarely wear them, even though Grigori Volchenkov, the clinic's chief physician, said "quite a few" medical workers had become ill, including an anesthesiologist who died last year.

Bogdanov worked as a part-time driver and electrician at the outdoor market where his 36-year-old wife, Irina, has been selling chicken legs ever since the moribund machine-building factory where she used to work sent its employees home for a permanent, unpaid vacation.

Bogdanov tried hard not to spread the disease at home. He and his wife slept in different rooms, but she still became infected. They were both prescribed medicine. She took hers. Bogdanov tried, but sometimes his work took him far from any clinic. Like many Russian TB patients, he would skip a day, then a week. Besides, after a while, he was feeling better.

Interrupting his medication could have caused Bogdanov's tuberculosis bacteria to mutate and develop resistance to the cocktail of antibiotic drugs that TB patients must take regularly for at least six months, even after the fever and coughing subside. The bacterium, Tuberculosis bacillus, is opportunistic and tough to kill. It has found a welcome home amid the chaos and deprivation so prevalent in post-Soviet Russia.

More than 125,000 Russians will have developed tuberculosis by the end of 2002, triple the amount of a decade ago, according to estimates from Russia's Ministry of Health. The country's infection rate is 83 new cases per year for every 100,000 residents. By comparison, the TB infection rate in the United States is fewer than 8 per 100,000.

About 21,000 of the Russians who contracted TB last year will eventually die of the disease. Although these figures represent a sharp increase in Russia since the end of the Soviet Union, they are nowhere near the rates of poorer nations in Africa or Asia, where rates can be 1,000 per 100,000.

What makes Russia notable is the rapid development of TB strains that are resistant to drugs. Widespread misuse of the antibiotics used to treat TB has resulted in the development of these multi-drug-resistant strains. The problem has been exacerbated by pharmaceutical companies that sell drugs directly to regional medical authorities and clinics without adequate warnings about how to use them, say Russian health care specialists.

The main incubator of multi-drug-resistant TB has been Russia's overcrowded, underfunded system of prisons and pretrial detention centers. Prisoners often receive only partial treatment because of the lack of necessary medicines. Of an estimated 1 million prisoners, about 100,000 are believed to have TB. One in five has the drug-resistant strain.

The number of TB cases could mushroom in the next few years and combine with the AIDS epidemic sweeping across Russia to claim hundreds of thousands of lives, said Andrei Slavutski, medical coordinator for Doctors Without Borders in Moscow.

Multi-drug-resistant TB has begun spreading to the civilian population, carried by some of the 50,000 infected prisoners released each year. In Kemerovo, Siberia, 13 percent of civilian TB patients now have drug-resistant strains, a figure that has more than tripled in three years, Slavutski said.

Each year doctors are discovering a larger percentage of drug-resistant patients, especially among alcoholics, intravenous drug addicts, homeless people, and impoverished part-time laborers such as Bogdanov.

As his last summer went on. Bogdanov steadily lost weight. He coughed up blood. When he could no longer climb the stairs to his small apartment, Bogdanov did what other TB patients who put off their treatment eventually do: He called for an ambulance.

"I needed to work," he said. "But by August I felt I couldn't work anymore. So I came here to get cured."

Bogdanov's doctor, Raisa Kukharyonok, who had been listening quietly as the patient told his story, clicked her tongue and sighed. In the past 10 years she has heard many stories like Bogdanov's. It pains her that these patients insist on smoking; that the diabetics in the ward, like Bogdanov, insist on eating the sweets their family members smuggle in; and that the alcoholics somehow get their hands on booze.

"When you work this long, you get tired of telling them they have to help themselves," Kukharyonok said. "If we cry over each patient, we won't have strength to cure the others. We do everything we can for them, but our job is tocure. We can't suffer. Especially when we see young men die of bleeding in their lungs."

Unlike hospitals in poorer regions, whose leaders have been slower to respond to Russia's TB epidemic, Vladimir's clinic -- which enjoys support from the World Health Organization and the US Centers for Disease Control -- has a supply of second-line drugs that could cure such patients as Bogdanov. But he is so weak and the drugs so strong that the doctors said they could not possibly give him the right doses, an argument disputed by some American physicians, who say almost any case can be treated.

Barring a miracle, there was nothing anyone could do to save Bogdanov, his doctors said.

"They skip their treatments, they live their lives, and then they all say, `Doctor, help me, save me,' " Kukharyonok said, as Bogdanov looked down at his hands, chastened. "But by the time they call us, it's too late."

She paused and looked out the window. "It's too late."

Bogdanov listened to all this and responded calmly. "If I hadn't missed treatments, I wouldn`t be so sick," he said. "Our doctors are good. It's my fault I didn't cure myself to the end. I blame myself. I can say that I have lived my life."

Bogdanov shared a windowless room with 10 other patients. Some of them had drug-resistant TB. Bogdanov and his doctors worried that other TB patients might catch the resistant strain from him.

The clinic is surrounded by relics: a bust of Soviet founder Vladimir Lenin near the courtyard, a broken-down ambulance fitted with an X-ray machine. Doctors once used the vehicle to travel to outlying districts to conduct mass TB screenings.

   


EARLY EXAM: A doctor examines 4-year-old Daniel Baranov during his first visit to the regional TB clinic. Baranov shows signs of TB infection. Children are frequently infected by parents slow to get care.

But like the ambulance, that system has broken down in impoverished Russia. Mikhail Perelman, the nation's chief TB specialist, plans to restore that system by supplying regional clinics with new digital radiography equipment. Perelman said that the Kremlin had provided the necessary financing to defeat the TB epidemic and that rates of incidence in Russia were already declining.

"Fighting TB is not a medical problem," Perelman said. "It is a problem of economics and organization."

Many Western and Russian specialists working in the field argue that the main problem is persuading patients to stick to their treatment. That, they say, requires social workers and incentive programs, not new machinery.

Bogdanov died on New Year's Day, two months after our meeting.

The situation for other patients at the Vladimir clinic improved late last month when they began moving to a new facility partially financed by American aid and equipped by WHO. The new site has a state-of-the-art laboratory and a separate ward for patients with drug-resistant TB.

The clinic also offers free transportation and hands out free groceries in an effort to persuade outpatient TB sufferers to come in and get their medicine. But Bogdonov's wife, Irina, does not need the added motivation. She has already seen what the disease did to her husband.

Irina refused to be interviewed for this story, saying only that she does not like to talk about her late husband's illness. But she appeared to learn from it. She never skips her treatment and is no longer infectious. If she stays the course, she will be cured.

The Soviet medical system took special care of people with TB, making sure each patient was fully recovered before being released from the hospital. Recovering TB patients received better apartments and better working conditions. Families and friends of anyone who suffered from the illness also received treatment. The system, like much of the centrally planned Soviet economy, was unwieldy, costly, and inefficient, but with the support of the communist state, it worked.

"The system made it a goal to make sure every person was accounted for," said Tamara Tonkel, who grew up in a family in which everyone -- her father, mother, and brother -- had the illness. "Now you cannot organize people. So many people are unemployed. Before, people were not afraid to say they had TB. Now they are afraid of losing what work they have."

Of dozens of TB patients interviewed for this story, only one, a manager at an automobile plant in Ivanovo region, was protected by a compensation plan that guaranteed he would not lose his job during treatment.

Tomsk is one of Russia's hardest-hit regions. It has a severe Siberian climate and its proximity to Russia's largest prison colonies means a high proportion of infected former prisoners live among the residents. Ex-convicts tend to fall through the cracks in Russia and are more likely to work as migrant laborers and become alcoholics or drug addicts, lifestyles that sap the immune system and create openings for illness.

To attack the problem, WHO oversees projects in 26 regions in Russia to install WHO-approved strategies. Chief among those is a system known by the acronym DOTS -- Directly Observed Treatment, Short Course -- which requires health workers to watch patients swallow their one daily dose of medication and follow their treatment until they are cured.

The Boston-based Partners in Health runs one of the most advanced projects, aimed at improving the way health workers in Tomsk battle the spread of TB. The project trains doctors to use DOTS but also relies on social programs to reach patients. The Tomsk project is also one of only two in Russia that receives WHO approval for a small supply of subsidized medication to treat 430 patients with drug-resistant TB.

"We have slowed down the mortality in Tomsk," said Donna Barry, who works for Partners in Health. "We have also slowed down the transmission. But one important factor is making sure someone watches the patients taking 100 percent of their doses. That is not always happening. We clearly have a huge number of alcoholics in the provinces, and that does create problems for staying on the program."

Dmitri Arkhipov, a resident from the village of Dzerzhinskoye, 30 miles east of Tomsk, was an alcoholic who had spent time in prison for theft. It was there, according to his 19-year-old daughter, Yulya Gracheva, that Arkhipov contracted TB. But when he got out of prison, Arkhipov did not take his treatment seriously.

"Instead, he went back to his old life," Gracheva said during a break from her job at a bakery in Dzerzhinskoye.

Arkhipov received groceries from the nearest TB clinic, a half-hour ride by bus. But he sold the food "to buy booze," Gracheva said. He had a relapse two years ago and went to the hospital for five months. Doctors gave him strict orders to take his medicine when he got out, but he slipped back into his old habits.

In September, when cold weather started to batter the run-down, poorly heated dormitory where he and his daughter live in adjacent single rooms, Arkhipov started to cough. Gracheva called an ambulance. Gracheva had no phone and she rarely visited her father in the hospital. On the day of our interview, Nov. 2, she had no idea that her father had died two days earlier.

Even the most advanced strategies cannot cure patients without the will to be cured. But what about people who make that life-or-death decision for others?

At a children's TB ward in Ivanovo, 200 miles northeast of Moscow, Inna Bondareva, 14, did her homework with her friend, Olga Karlysheva, also 14. The girls were in the middle of a yearlong treatment. But when Inna goes home, she will return to her father, who infected her but refuses treatment.

"There is nothing we can do to make him seek treatment," said Larisa Bogdanova, the girls' doctor.

Sometimes parents of infected children are drug users or alcoholics, ill-equipped for coping with the illness and raising their children, Bogdanova said. Sometimes the children understand more about preventing unnecessary and deadly complications than their parents.

That may have been the case with Alisa Zantova, 11, whose father died of TB last spring. Alisa is also infected, but it was her father who always took her to the clinic for her medicine. Her mother, an alcoholic, was rarely home.

Sensing that she should still receive treatment, Alisa left home one day last spring. She walked across the city until she found a clinic for children of TB patients. And then she checked herself in.

David Filipov can be reached by email at filipov@globe.com

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