The crime of contagion
It is tempting to apply a policy of coercion for those who won't co-operate with TB treatment
Wednesday 24 February 1999
And then there is the individual himself, swallowed up in this whiteness. Just 28, Paul looks drawn and tired. You can almost hear Keats's own angry line against the ravages of tuberculosis: "Youth grows pale and spectre thin, and dies."
But, of course, Paul Mayho did not die. He was lucky. He caught a particularly nasty strain of TB, resistant to all but the most toxic drugs. Of seven others infected in 1995 at London's Chelsea and Westminster Hospital, six are dead. How did Paul survive? Because he is a feisty, bolshie soul. But also because he spent months in isolation receiving constant treatment. It has led to an extraordinary new book, the Tuberculosis Survival Handbook, detailing a descent into despair after one doctor warned him that he might never leave his hospital room alive.
You may think that this book describes an experience no more applicable to others than was the ordeal of the Beirut hostages. You would be wrong. Tuberculosis, which John Bunyan called "captain of all men of death", is back in a big way. And public health directors, worried about its spreading - particularly in a drug-resistant, killer form - want tough new laws, raising important civil rights issues. The days are coming when even non- infectious TB patients could be locked up if they do not take their medicine. Many more people can expect experiences similar to Paul's.
So tot up carefully the cost of that experience. For a start, Paul lost his partner. Both are HIV positive. When Paul was released from hospital, he was told that he should not live with anyone who was immune-suppressed, for fear that they would be vulnerable to infection.
"I said: `I can't live with you any more,'" Paul recalls. "The relationship had become impractical. He had visited me every day in hospital and wanted us to stay together. But I couldn't have that on my conscience. He is my best friend. We are still in contact. But we could not carry on the way we were."
Paul's diary describes a surreal world in which he survived the loneliness of TB on Temazepam, Valium and 80 cigarettes a day.
"I never saw the doctors properly. For months I was looked after by these Donald Duck-like characters, wearing orange masks. Mentally I sketched their faces, but I could see only their eyes."
His symptoms included depression, anxiety and possible psychosis - those were just the side-effects of cycloserine, an anti-TB drug. The disease itself involves emaciation, a persistent hacking cough, a racing pulse and night sweats.
"My concentration got so small. Someone bought me a PlayStation, but I could not use it. There was too much happening on the screen. It bamboozled me. Even watching television, I lost the thread. It was as though a part of me was going insane, while the other part was rational. I knew I was going a bit strange when I asked someone if I had died. I couldn't remember how I had died, but I seemed to be in a a limbo, neither here nor there."
There were the outbursts of anger at the humiliation of living in a room that he could not leave, but which offered no privacy. He describes being given a yellow bucket of strange solution in which to place his crockery. Then a nurse begins to wash the walls of his room with a solution bearing a skull and crossbones, and a warning that plenty of ventilation is needed.
"I walk around like an animal being gassed," he writes, "trying to find a pocket of breathable air. There isn't one... My eyes start to itch, and my skin and throat burn. The doctor comes in to see me... Who authorised this? Was it really necessary? He cannot or will not answer my questions. The barrage ends with me being downright rude: `My friend, you are an arsehole, get out.'"
Today Paul is cured, and has his own business. It is more than three years since he left hospital. But he is still traumatised. I think I'll catch my death in his flat. It's so cold. The window is wide open and the heating is off on one of the coldest days of the year.
"I love the feeling of air moving about," he says. "You have to remember, my window was nailed down and there were bars across it. I'm very alert to TB. I can recognise the cough. It has a rattle. Sometimes I'm down Brick Lane, which has a high incidence of TB, and I see people coming out of the mosque, heaving their guts out. I am very conscious of my air space. I can't stand planes, because they re-circulate stale air. There is always the fear of becoming ill again. Last year, I got a cold. Everyone around me had colds. But I thought: `Oh my God, the disease has come back.'"
Paul is not alone in looking out for TB. The NHS is worried. Dr Liam Donaldson, the new Chief Medical Officer, is conducting a review of infectious disease control. Most directors of public health expect him to seek changes in the law so that non-compliant TB patients - even those who are not infectious - can be confined as a last resort.
It is a policy change that fits the zeitgeist. Last week, for example, Jack Straw announced plans permitting the detention of people with personality disorders, even if they have not been convicted of a violent offence. The Government is worried about "walking time-bombs". The same concern is increasingly attached to people with non-infectious TB who are not pursuing treatment. They could easily become infectious and pose a general risk. Perhaps worse, their half-hearted use of drugs threatens to create the conditions in which more drug-resistant strains of TB can develop. Better to lock them up.
In New York, the civil liberties debate on this issue is closed. In the early Nineties, the city faced an explosion in TB cases combined with a dilapidated public health infrastructure. They reformed the type of liberal laws that we still have here in Britain. As a result, more than 200 non-infectious individuals have been detained, some for more than two years.
So what should we do? A policy of coercion is tempting, especially for the poor, the chaotic and the - arguably - mentally ill who will not co-operate with TB treatments that can be complicated and unpleasant and last for a couple of years. Such an option probably needs to be held in reserve for the most recalcitrant cases.
But, as Dr Richard Coker, a TB specialist at St Mary's hospital, London, says: "It is all very well using sticks to control TB, but you need carrots as well. My concern is that there are few carrots to support people in TB treatment."
By "carrots" he means the combination of food, money and accommodation that has been made available to people undergoing TB treatment in New York. In comparison, our own system is disordered, fragmented and underfunded. Indeed, it is fair to say that it is often the system, not the patient, which is failing to comply with what is needed to beat this illness. We should fix the system, before thinking of locking up many more people.
`The Tuberculosis Survival Handbook' by Paul Mayho is published by XLRB Graphics, Truman Brewery, Brick Lane, London E1 6QN, price pounds 5.99. `From Chaos to Coercion, Detention and The Control of Tuberculosis' by Richard Coker will be published in the autumn by St Martin's Press
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