The terrible burden of MDR-TB in Abkhazia

© Alexander Glyadelov
In Abkhazia, MDR-TB is known as the 'King of Diseases'. Says one patient, "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."

MSF has supported the local National TB programme to treat TB Patients in Abkhazia since 1996. Since 2001 the programme has also included treatment for drug resistant TB (MDR-TB) - one of the most frightening health scourges of former Soviet countries. MSF has rehabilitated Gulprish hospital and supplies it with drugs, 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 (MOH) personnel.

"The MSF programme in Gulprish hospital admits regular TB and MDR-TB patients for the intensive phase of their treatment when they are highly contagious and need constant monitoring," explains MSF Head of Mission, Thomas Balivet. "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."

Ministry of Health (MOH) staff man these points, but all drugs are provided by MSF, which closely monitors the MOH 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 a half months. He has regular TB, and is at the stage in his treatment when he could be 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, so the team have decided to keep him in hospital.

He is generally upbeat about his treatment, a regimen that requires him to take between three anti-TB pills once a day, but complains that the treatment has led him to "completely lose my appetite and sense of taste. Now I can only really manage to force down one meal - of porridge and milk - a day".

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.

TB is a difficult, but treatable disease. An air-borne illness, it is highly contagious and the treatment is lengthy - two to three months in hospital and then several more months taking a cocktail of drugs under the supervision of community nurses in the community. The MSF program has included more than 1,500 TB patients since 1996, many of whom caught TB in overcrowded prisons.

"But many of the first-line drugs used in its treatment have been the same since the 1960s," explains MSF Dr, Danielle Heinrich, "and very little research is being done into new alternatives or a reliable vaccine (the current vaccine is unchanged since 1921), which is absolutely crucial to halt the spread of the disease."

The list of commonly experienced side-effects for MDR-TB treatment is staggering, and reads like a disease in itself: diarrhoea, 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, blood disorders.

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. And sadly, the combination of post-war devastation in Abkhazia and the poor treatment meted out in other former Soviet countries and prisons, means that multi-drug resistance MDR-TB is prevalent. The MSF mission estimates that 5 to 13% of TB cases they see in Abkhazia are MDR-TB.

Most patients contract MDR-TB because initially they were not treated properly for 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. MSF Dr Adrien Marteau 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 WHO treatment protocols, but what we find so frustrating is that the diagnosis and treatment for the disease are both hopelessly out of date."

The list of commonly experienced side-effects is staggering, and reads like a disease in itself: diarrhoea, 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, 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," explains Dr Marteau. Advised by this resistance profile, the doctors juggle 5 drugs (out of a possible 12) in their DR treatment regimens, which have wide range of side effects. These second-line treatments include antibiotics, such as PAS and streptomycin that have been in use for over 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 DR programme 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, who now has MDR-TB, tells me 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 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 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 DR 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 organism 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.

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 pot 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.

Faith and pride in the Russian system of treatment - which (as it is often poorly administered) might have been responsible for the build-up of resistance - remains frustratingly undiminished.

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 and support and educate patient families. "People don't let me near their children, and I know that if I did go near them, and, God forbid, they got TB, then I'd be the first one they would point the finger at," said a patient in an ambulatory point.

Other cultural misconceptions affect the attitude towards contagion and the treatment itself. Many patients explain they got their TB by catching a cold, or swimming in cold water. Others have firmly held beliefs in the power of injections and infusions for the liver, which the MSF medical team say is not evidence based.

Faith and pride in the Russian system of treatment - which (as it is often poorly administered) might have been responsible for the build-up of resistance - remains frustratingly undiminished. The medical practice of the MSF teams, which is different to that normally employed in Abkhazia, is regarded sceptically by some patients - especially those who have setbacks during their course of treatment.

As Nathalie Severy says, "For many patients the lack of explanation for their disease, and how and why they were infected is a real problem. They often harbour feelings of guilt, or blame the war in a non-specific way. It is hard for them to trust our treatment."

Aside from battling with some ill-conceived, but deeply held, patient views, the MSF team also struggle to change attitudes among MOH staff they collaborate with. Medical responsibility for patients is shared, but the rigorous separation of contagious, TB and MDR-TB patients that is necessary to avoid cross-contamination and re-infection within the hospital itself, is very hard to enforce. Over-prescription of infusions to 'wash the blood', poor standards of nursing care, medical confidentiality and the humane treatment of patients are also areas under frequent discussion.

At 70, Tina is one of the oldest patients in the DR programme. 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 hospital now for the second time, she speedily washes down her morning dose of seven multi-coloured tablets with yoghurt 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.

Background 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 organisations, like MSF, provide vital support to the ailing state structures.