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Personal stories of HIV and TB

Betty's face smiles broadly and her eyes twinkle when she sees me the second time. All she wants, she says, is to sleep in a room by herself and have some home-cooked meals. She wants to see her grandmother, mother and son, and spend some time with them. And the chances are she'll get to do all those things soon. But she may not.

By Dr. Richard Coker

Betty (not her real name) has had AIDS for more than two years and she has spent most of those two years living in a detention unit on Roosevelt Island. She hasn't walked on grass, or felt rain since she was committed.

Betty has committed no crime. She has tuberculosis. But Betty didn't take her TB medicine when she was "outside". She has been detained on the island not because she is an immediate public heath threat but because, in legal terms, she 'cannot be relied upon' to take her medicine. Betty is one of more than two hundred New Yorkers with tuberculosis who have been detained in Roosevelt Island's Goldwater Memorial Hospital since 1993 when the TB epidemic threatened to overspill beyond the disaffected into the general population.

In the late 1980s and early 1990s New York City witnessed a dramatic TB epidemic with rates trebling in 15 years. By 1990, New York City, with 3 percent of the country's population, was accounting for 15 percent of the country's tuberculosis cases. But more than that, disease from drug resistant strains (which make treatment considerably more difficult, and untreatable in some cases) was increasing. The percentage of cases resistant to at least one drug rose from 19 percent in 1987 to 28 percent in 1991, whilst resistance to at least both isoniazid and rifampicin (MDR-TB) rose from 6 percent to 14 percent.

The response to the epidemic included improved surveillance, expansion of measures to help people adhere to treatment, including directly observed therapy (DOT), improved measures to ensure the spread didn't occur in hospitals and other places where those with TB might congregate, and a huge investment in the public health programme for the city.

The law was also changed, so that those who didn't stay on their treatment could be ordered to, and as a last resort, be isolated from the public if they continued not to take their treatment. Betty was one of these people.

The city's health authorities have, to the surprise of many experts, 'turned the tide'. Tuberculosis rates, and in particular, rates of drug-resistant tuberculosis have fallen dramatically since the early nineties. This effort has cost more than a billion dollars and the key has been getting people to take treatment and complete the course.

The New York City response to TB has been hailed around the world for its remarkable success. The World Health Organization has described the use of one component of New York's programme, that of DOT, as no less than a 'breakthrough' in the fight against the emergency that is TB.

Tuberculosis is a global problem and New York has shown that the epidemic can be controlled. But not everywhere is like New York (there's nowhere quite like New York!) The question is, how should other countries respond to their TB problem? What lessons should they take from New York? Which lessons are culturally transferable?

Many believe that the cause of the rise in tuberculosis, and in particular the rise of drug-resistant strains, stems from individuals who are unable to take their medication, or are given the wrong treatment. This might be because they have difficulty getting to see a doctor, the doctor prescribing the wrong treatment, or prescibing for not the correct length of time. It might stem from side-effects from the drugs making treatment intolerable, or because other problems in people's lives far outweigh the problem of TB (homelessness, for example). There are any number of reasons why people get inadequate treatment. And Betty illustrates one reason - she was dying from AIDS and had given up hope; she had nothing to live for and the TB treatment made her feel worse. So she stopped taking it and her TB came back, but this time it was more difficult to treat - it was resistant to the best, most effective, drugs.

Tuberculosis is a global scourge and knows no borders. Our responses to it must be directed at both reducing the amount of disease by preventive means and treating those who have the disease humanely. What this means in practical terms may differ from country to country, and region to region, from culture to culture. But we must not forget that effective treatment is available, as it has been for several decades. As a global community, by failing to support, encourage, and enable people with tuberculosis to receive and take the correct treatment we may provoke drug-resistant strains to develop and needlessly threaten a return to a time when the disease was untreatable.

The question is: are we doing enough to help people to take their treatment, and are we doing enough to make sure that they are always getting the right treatment for the right length of time? If we are not then, I believe, it is premature to think of using more draconian measures to ensure compliance

[For further information regarding the K.S. Roy Hospital, please contact Mr & Mrs Jackson, IIMC (UK), 10 Widmore Drive, Hemel Hempstead, Herfordshire, HP2 5JJ; Tel/fax: 01442 25018] .

Dr Coker's book From Chaos to Coercion; detention and the control of Tuberculosis is published by St. Martin's Press, New York