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A Terrible Burden: Drug Resistant Tuberculosis in Abkhazia
March 24, 2006
Clinging to the side of a steeply wooded slope, with a spectacular view out onto the bay of Sukumi, are the ruins of a tuberculosis (TB) treatment sanatorium that was once a jewel in the crown of the TB control system in the former Soviet Union. The ruins look down on Gulripsh Hospital, now the center of the Doctors Without Borders/Médecins Sans Frontières (MSF) TB program in Abkhazia, located within the borders of Georgia in the Caucasus region.* Gulripsh remains a potent symbol of the decay of TB treatment in this forgotten part of the world.
MSF has supported the local branch of the national TB program in Abkhazia since 1996. Since 2001, the program has included treatment for multidrug-resistant TB (MDR-TB), one of the most frightening health scourges of former Soviet countries. MSF has rehabilitated Gulripsh Hospital and supplies it with medicines, materials, and laboratory equipment. An international team of three doctors, one nurse and one psychologist, and eight local MSF staff, including a nurse, a pharmacist, three health educators, and three social workers, work alongside Ministry of Health personnel.
"The MSF program in Gulripsh Hospital admits regular TB and MDR-TB patients for the intensive phase of their treatment when they are highly contagious and need constant monitoring. Once they are no longer contagious, they are discharged home, but must continue to receive treatment through directly observed therapy, or DOTS, via a network of eight ambulatory points spread all over Abkhazia," says MSF Head of Mission Thomas Balivet.
Ministry of Health staff work at the ambulatory points, but all drugs are provided by MSF, which closely monitors the ministry's nurses and supervises patient treatment.
Sasha, painfully thin and with deep lines on a sun-worn face that make him look older than his 57 years, has been in Gulripsh for five-and-half months. He has regular TB, and is at the stage in his treatment when he could move home and be supervised through DOTS. But his 'home' in Abkhazia was a dilapidated, disused factory-workers' hostel, with no water or electricity, and where he drank heavily. The MSF team decided to keep him in the hospital. He is generally upbeat about his treatment, a regimen that requires him to take up to three anti-TB pills once a day, but he complains that the treatment has led him to completely lose his appetite and sense of taste. "Now I can only really manage to force down one meal of porridge and milk a day," he says. He is grateful that he was included in the treatment program. He lost his passport in a fire and normally people without any documents struggle to gain access to healthcare. He is nervous about what will happen to him if and when he is treated and discharged.
"King of Diseases"
TB is a difficult, but treatable, disease. It is highly contagious and the treatment is lengthy — two to three months in the hospital and then several more months taking a cocktail of drugs under the supervision of community nurses. The MSF program has included more than 1,500 TB patients since 1996, many of whom caught TB in overcrowded prisons. "Many of the first-line drugs used in TB treatment have been the same since the 1960s," says Danielle Heinrich, an MSF doctor. "And not enough research is being done into new alternatives or a reliable vaccine — the current vaccine is unchanged since 1921 — which is absolutely crucial in halting the spread of the disease."
Aside from the lengthy treatment and unpalatable medication, one of the most difficult aspects of TB treatment is that if it is not followed until completion, the TB bacilli develop resistance to the first-line drugs. Sadly, the combination of post-war devastation in Abkhazia and the poor treatment meted out in other former Soviet countries and prisons means that MDR-TB is prevalent. The MSF team estimates that 5 percent to 13 percent of TB cases it sees in Abkhazia are MDR-TB.
Most patients contract MDR-TB because initially they were not treated properly for regular TB. But for an unlucky few, their first TB infection is with a resistant strain of the disease. MDR-TB is known, according to 50-year-old patient Bandor, as the "king of diseases." "I have come to respect its power during my three years of treatment; we learn to use 'vi' [the polite 'you' form in Russian] not 'ti' [the informal 'you'] when we talk of it," he says.
Treatment for MDR-TB can take more than three years, but a cure cannot be guaranteed. Adrien Marteau, a doctor with MSF, describes the results so far: "Of the 100 patients MSF has included in the program since 2001 (many of which were unsuccessfully treated for regular TB) 38 are still in treatment, 25 are cured, 6 have been excluded, 18 defaulted, unable to cope with the treatment and its side-effects or other personal reasons, and 13 have either died or their treatment has failed. We rigorously adhere to the World Health Organization (WHO) treatment protocols, but what we find so frustrating is that the diagnosis and treatment for the disease are both hopelessly out of date."
Staggering Treatment Side Effects
The list of commonly experienced side effects is staggering, and reads like a disease in itself: diarrhea, loss of appetite, intense gastro-intestinal discomfort, weakness, dizziness, headaches, mental confusion and psychosis, joint pain, hearing loss, loss of sight, neurological deficiency, impaired liver and renal function, skin rashes, arrhythmia, and blood disorders.
"MDR-TB varies from patient to patient, so we send regular sputum samples to a reference laboratory in Europe for analysis of the resistance patterns, and then, based on the results for each individual, we design a regimen specifically for them," says Dr. Marteau. Advised by this resistance profile, the doctors juggle five drugs (out of a possible 12) in their MDR treatment regimens, which have a wide range of side effects. These second-line treatments include antibiotics, such as para-aminosalycilic acid (PAS) and streptomycin that have been in use for more than 50 years. Many drugs are only available in noxious powder or tablet form, and patients are required to take up to 15 pills a day, plus daily injections, for at least 6 months.
One of the criteria for inclusion in the MDR program is that patients must sign a contract committing them to seeing their treatment through. But some patients find they simply cannot cope with the treatment and its terrible side effects. Default rates are high; lots of patients stop their medication as soon as they feel better, but too soon to cure their disease. One 36-year-old man, who now has drug-resistant TB, says he started five other courses of treatment all over Russia and Georgia, but couldn't see them through.
"The drugs and their unpleasant associations are so powerful," says MSF psychologist Nathalie Severy, "that some patients get to the point where, however much they want to, they simply cannot take their medication and vomit at the sight or smell of it."
If, after battling for months in and outside the hospital, patients make the painful decision to stop their treatment, they face certain death.
Even the most committed patients find the treatment regime wearing. Thirty-seven-year old Irina insists, "You have to fight against the fear inside, if you collapse, the disease will defeat you."
"It's just not possible to bear taking these pills for two years, your body can't manage it," says one of the patients in the MSF-run patient-support group. "It feels like you are treating one part of us, but damaging other parts. It seems to us like a scientific experiment," says another.
One MDR-TB patient, living in a small room cluttered with icons and cats in a disused church, with matching tattoos of Lenin and Stalin on his chest, harangues the DOTS nurse who visits him every day, except Sundays. "Why can't I have a proper weekend? My body needs two days off. You put my body under too much pressure," he says. When the nurse gently tries to explain that having 'breaks' is what breeds resistance, he shrugs off her remark in disgust.
Enduring Cultural Stigma
For many patients the cultural stigma around TB is one of the hardest things to bear. The hospital rules are a stark reminder of their contagion; all staff must wear face masks to protect themselves against infection. The hospital surroundings, while bright and relatively uncrowded, are institutional and basic. MSF rehabilitated the rooms, and has made attempts to brighten up the communal spaces with potted plants and a couple of table tennis tables, but many patients come to the hospital straight from prison, and once more feel trapped and isolated from the world outside. Once discharged, even if they are cured, many patients report being shunned by the community, despite the efforts of MSF social workers and educators to try to support and educate patient families.
At 70, Tina is one of the oldest patients in the MDR-TB program. She was treated for TB in 2000, and a fiercely committed and compliant patient, was a textbook treatment case. On discharge, however, she lived with her son, who the team suspect infected her with MDR-TB. He refuses to seek treatment. In the hospital now for the second time, she speedily washes down her morning dose of seven multi-colored tablets with yogurt she makes for herself in the hospital, muttering to herself "Be healthy babushka (grandmother)!" As we get up to leave, she tells us about the grandchildren who she desperately misses and who constantly ask after her, "I will do anything to be cured," she says.
* During Soviet times, Abkhazia was an autonomous republic, but was within the territory of Georgia. The Abkhaz people were always keen to be independent, and in 1992-3, after the USSR collapsed, they fought a bitter secessionist war with Georgia. The war ravaged the local health infrastructure and left a political stalemate. Abkhazia now has its own government and institutions, but, according to the rest of the world, does not exist and therefore is not entitled to external donor support. Peacekeepers patrol the border areas and humanitarian organizations, like MSF, provide vital support to the ailing state structures.