Consumed by guilt

It was one of those diseases that medicine should have eradicated from modern life. But now, among the poor and helpless, TB is back. Already apparent in Britain, in the US it has assumed the proportions of an epidemic - one incubated on the streets and in homeless shelters, encouraged by Aids and by cuts in public health spending

ILLNESS has etched an extra 10 years of weariness into Raymond's gaunt 39-year-old face. Hunched over a table in his mother's small Brooklyn apartment, he opens his olive army shirt to reveal a rash crawling past the crude tattoos on his torso. The apartment is spartan and white like a hospital room: three pieces of white cane furniture, a television, a bureau crammed with Catholic religious icons and a single bed with two small bloodstains dotting the sheet. Scattered before Raymond on the table-top are the brightly coloured pills and capsules designed to keep him alive.

'It's easy to get sick,' he sighs, after scoffing back a handful of the drugs. A Puerto Rican immigrant who has been homeless for eight years, Raymond was sleeping in the abandoned buildings and homeless shelters of Brooklyn when his fevers and sweats began late last year. Doctors at Long Island College Hospital pumped fluid from his lungs and delivered a diagnosis that is becoming increasingly common in the overcrowded emergency wards of New York: he had contracted HIV, the virus that can trigger Aids, and his lungs were infected with tuberculosis.

This was a new kind of tuberculosis, one that did not respond to conventional treatment, so doctors prescribed a pharmaceutical smorgasbord of nine drugs which they instructed Raymond to take every day for the next nine months. Yet even as TB subsides in his lungs, the rash is an exterior omen: the HIV still lurking in his blood makes his immune system acutely vulnerable to a renewed attack. Homeless and penniless, unable to even guess where he contracted these two malevolent infections, Raymond seems stunned by the enormity of his fate. He talks about finding a comfortable place to live, but one can't help thinking he lacks even a comfortable place to die.

'I've been on the street too long, sleeping in empty houses,' he concludes in Spanish-

inflected English, as his tiny mother stands nearby smiling uncomprehendingly. He gestures to the window overlooking this poor Hispanic neighborhood, crowded under the shadow of the Williamsburg Bridge. 'That's how people get sick. Too many people living together, sleeping like animals in empty houses and subway stations.'

It's a lament that would be numbingly familiar to any doctor toiling in this city's public hospitals. Tuberculosis, a disease once said to be vanquished, is reanimating itself in the lungs of America's poor. The root causes of its resurgence - homelessness, Aids, drug-abuse and a disintegrating health-care system - are best summarised in a single word: neglect. Tuberculosis is a disease of poverty. Its rebirth says much about the social disintegration of American cities over the past decade.

A century ago, the writer Ernest Poole visited New York's TB-infested tenement slums and expressed shock at the disease's unheeded spread. 'It is a plague in disguise,' wrote Poole. 'Its ravages are insidious, slow. They have never yet roused people to a great sweeping action.' Those cautionary words are equally apt today, for although this latest TB epidemic embodies many of the social and economic issues of the US Presidential election, and although TB is once again one of the nation's most alarming public health problems, it has barely been mentioned in the election campaign and no national plan exists to combat it.

Because it is such a stealthy infection, and because its victims lack a political voice, TB has long evaded medicine's grasp. In the 19th century, when it killed Chopin, Keats and many other artists, it was spuriously romanticised as a langorous affliction of the aesthetically-

inclined. It wasn't until the 1890s that it was recognised as a contagious infection, the feared 'white plague' that was then the leading cause of death in the United States.

The new TB is different, swifter and more deadly than its predecessors. It can overpower the drugs that once subdued it, killing its victims within weeks of infection. And while TB sufferers have always been poor and malnourished, today they are frequently ravaged by Aids, crack addiction, mental illness and other modern urban afflictions. The disease and its carriers are mirror-images of each other, unpredictable and frequently uncontrollable.

The result is a public-health threat which many doctors consider more calamitous than Aids: an often incurable infection that is spread by human breathing. Last year, an outbreak of drug-resistant TB swept through several upstate prisons in New York, killing 28 inmates and one guard. Outbreaks in four hospitals - three in New York and one in Miami - have infected 139 patients and eight staff-members since 1990. More than 50 of those people have since died, including half of the health-care workers.

'I would say this problem has much more serious implications for the general population than Aids,' says Dr Dial Hewlett Jr, head of infectious diseases at Lincoln Hospital. 'The implications of a broad outbreak are absolutely staggering.' Kenneth Ong, Deputy Health Commissioner for the city, recently described the spread of drug-resistant TB as 'a disaster'.

In New York, which has the highest infection rate in the United States, a battle-plan has emerged that is equal parts arcane and futuristic. TB wards are being opened in public hospitals for the first time in decades, and old surgical procedures such as lung-removal are reluctantly being revived. Meanwhile, coroners at the city morgue conduct autopsies dressed in fully-sealed 'space-suits' and Rikers Island prison has built an airlocked isolation ward overseen by guards and medical staff wearing surgical masks.

There was an eerie historical precedent to the city's announcement in early October that it was building a special high-security TB hospital, where unco-operative patients who had repeatedly refused treatment would be forcibly cured. Exactly 100 years ago, New York was racked by similar alarm about the tuberculosis plague that was killing more than 9,000 people a year in poor immigrant neighbourhoods. By 1903 the city had opened two prison hospitals on Blackwell's Island and North Brother Island, infamous institutions where 'wilfully careless' TB sufferers were held until cured.

Back then, city officials confidently predicted that tuberculosis would be eradicated within 12 years. Their counterparts a century later have no such illusions.

'THIS AIN'T the first time I've had it,' admits Bobby Dyson, flopped back on his bed in an isolation room at Bellevue Hospital. 'This is a re-occurrence.'

His spindly six-foot frame jutting out of blue cotton hospital pyjamas, Dyson wheezes slightly from the residual effects of the tuberculosis infecting his lungs. His hand rests on his chest and his eyes gaze at the murky sky overhanging the East River. Occasionally, he rises stiffly to go to the toilet and give vent to the telltale hacking cough of the consumptive.

A 42-year-old veteran of New York's streets and homeless shelters, Dyson arrived at Bellevue's emergency wards on 8 September suffering the fevers and chest pains of an affliction he knew well. This was his third attack since he first contracted TB eight years ago in the overcrowded, fetid quarters of the Third Street men's shelter, down near the Bowery.

Two days later, Dyson is already feeling better, for it takes only a few days of drug-treatment to reverse most TB infections and render the sufferer non-infectious. But therein lies a deception at the heart of this new TB epidemic: to be fully cured, an infected person must continue taking drugs for at least six months, usually after being discharged from hospital. Those who fail to complete treatment continue to carry the dormant infection, even though they might feel fine.

'Uh-huh,' Dyson confirms. 'You don't complete the process, it re-occurs.' He knows this because he himself has twice failed to complete his treatment.

The oldest public hospital in the US, Bellevue is a last-resort destination for the indigent ill like Bobby Dyson. The hospital's ground-

floor emergency room is a magnet for the thousands in this city who are unlucky enough to lack the private medical insurance that gets you in the front door of most other hospitals here in the world's most medically advanced country. A recent head-count revealed that 70 per cent of Bellevue's tuberculosis patients were homeless.

A decade ago these patients were relatively easy to treat. TB is actually difficult to catch, for its germs must be passed from one person's lungs to another, which usually requires prolonged exposure to a coughing infectious carrier in a badly-ventilated place. Only 10 per cent of those who test positive for TB ever develop the disease itself, and those who do can usually be cured with a six-month treatment of INH, the 'first-line' anti-TB drug developed in 1952.

Early in the Eighties, however, doctors at Bellevue and other New York hospitals began noticing some alarming new trends. First, the slow destruction of the city's low-income housing forced more people into homeless shelters, subway stations and streets, and the TB rate began climbing. Then Aids accelerated the process as its immune-deficient victims succumbed to TB. Finally and most alarmingly, patients stopped responding to anti-TB drugs like INH. These patients were often homeless people like Bobby Dyson who had been infected before but failed to complete their drug treatment once they were discharged from hospital. Half-cured, their bodies had become the spawning grounds for a new generation of TB germs which are now drug-resistant.

Drug-resistant TB is now spreading at an alarming rate, particularly in New York and San Francisco. One-quarter of TB patients at Lincoln Hospital in the South Bronx were drug-resistant in 1991, a six-fold increase on the previous year. These patients often require massive doses of drugs which have to be digested daily over a period of one to two years; the toxic reaction of the drugs, in fact, makes patients even more likely to give up on the treatment. The most serious are multi-drug resistant - 'drug-bankrupt', in the medical argot. These people often have Aids and they are caught in a terrible trap, for it can take several months to analyse a patient's sputum sample and experiment with all the drugs available. By that time, most drug-bankrupt patients are dead. 'That's the sad thing,' says Dr Cornelia Saceanu, director of clinical microbiology at Lincoln Hospital. 'By the time you know you have it, the destruction of the lungs is so bad that there's nothing you can do.'

Official statistics - 26,283 new cases of TB reported last year in the US - barely hint at the magnitude of the problem. Poorly ventilated homeless shelters and jails are breeding thousands of infections that are still unreported. Cases among children are up 40 per cent across the US. In hospitals, prisons and homeless shelters the disease has begun spreading to nurses, police, prison officers and other workers. These overburdened institutions had forgotten how to deal with TB, and are having to revamp ventilation systems and security.

So far, Bobby Dyson has been lucky: after eight years of playing Russian roulette with TB, he still has not developed a drug-resistant strain. Discharged from Bellevue after two weeks, he vows that this time he will complete his treatment. But that would make him an exception - a study at Harlem Hospital four years ago showed that 89 per cent of patients failed to return for treatment once discharged. Even assuming that he stays clear of alcohol and drugs, Dyson will have to make weekly trips to Bellevue in the dead of winter, lining up for hours to collect his drugs at the overcrowded out-patient clinic on the fourth floor. 'I'm kind of hoping, against the odds, that he's seen the light,' says Dr Anne Davis, his Bellevue doctor. 'It has serious implications for him, and for society in a way - for the people he comes in contact with.'

A delicate woman with a bob of auburn hair and pale blue eyes behind half-glasses, Dr Davis explains that she is old enough to recall another era when TB was drug-resistant. That was in the late 1940s, before anti-TB drugs were invented, an era of chest X-ray buses and blues songs like 'TB is Killing Me'. New York had more than 80,000 cases a year at that time, and beds lined the corridors of Bellevue's overcrowded TB ward, where Dr Davis spent several years as an intern - and then, after she contracted the disease herself, as a patient.

The prescribed treatment at that time was eight months in bed at Bellevue and another eight months at an upstate sanitorium. Yet today, Dr Davis regards that blighted period as relatively enlightened compared to the chaos she sees today. Aids was unknown back then and TB sufferers could find refuge in dozens of charitably-run rural retreats which had been built to replace the feared prison hospitals. 'People were better equipped to take care of TB in the past,' says Dr Davis ruefully. 'A certain complacency set in.'

The sanitoria and many TB clinics were dismantled in the 1960s and 1970s, as new drug treatments caused the TB rate to nosedive. No rural retreats await the TB patients who are discharged from Bellevue today. Instead, they're directed two blocks up the street to the Bellevue Homeless Shelter, where 1,100 men are crammed into 10 floors of a run-down Depression-era building overlooking the city morgue. Once better known as the Bellevue Psychiatric Hospital, this place still exudes a forbidding aura: vines creep up its brown brick exterior, armed guards man metal-detectors at the entrance and the yellowing corridors echo with shouted arguments.

Converting this Dickensian institution into a homeless shelter was a fine bureaucratic irony, for it was only 30 years ago that the mentally ill were 'liberated' from places such as this so they could be cured outside the grim confines of the psychiatric ward. Instead, the liberated joined the throngs of homeless, destined to drift back here with newly-acquired problems - disease, drug addiction, criminal records. The TB ward that occupies the fourth floor here has a 95 per cent cure-rate with its patients. But it also has beds to spare, a measure of the fear which shelters instil in many of the homeless. The real problem patients are still out on the streets.

How matters deteriorated to this level is a source of debate in the medical community. Aids certainly accelerated the infection rate and diverted billions of health-care dollars away from TB. Immigration from TB-prone countries such as the Philippines and Dominican Republic also contributed. But many doctors say the epidemic's true roots lie in the economic dislocation of the 1980s, as rising poverty levels conspired with political indifference in Washington. For six consecutive years the Reagan administration opposed the establishment of a national TB programme, and by the mid-Eighties cities like New York were so beleaguered by federal funding cuts, Aids and the homeless that TB was a headache no one wanted to deal with. 'We kicked the crap out of the whole public health system under Reagan and Bush,' says Laura Giles, a senior nursing administrator at Bellevue Hospital. 'Now we're paying the price.'

As recently as 1988, Washington health officials were working on a plan to eradicate the disease by the year 2010. But TB never left blighted neighbourhoods like Harlem and the South Bronx, despite Washington's optimism. With considerable cynicism, black and Hispanic leaders note that action is finally being taken now that the disease has spread beyond the confines of the poor. In July the epidemic reached Wall Street, when two traders at the Commodities Exchange in the World Trade Center tested positive; their colleagues were immediately tested and issued badges identifying them as non-infectious.

The costs of stemming the tide now are impossible to estimate. The Bush administration has set aside dollars 35m for 1993, yet the Centre For Disease Control in Atlanta has called for dollars 540m a year and New York City alone is spending dollars 100m in the coming year. Central to New York's plan is a carrot-and-stick policy: TB patients who take their medication will be rewarded with cash and food, while those who repeatedly refuse treatment will be detained in a locked TB hospital for three months or more. (Between 1988-91, more than 30 patients were tied to their hospital beds and forcibly treated after the Health Department ruled they were a danger to the public.)

There is probably no better measure of the social breakdown in US cities than the fact that the ill now have to be bribed by their doctors to take the free medicine that can cure them.

JACQUELINE TREVINO, a 28-year-old social worker, is talking about an alcoholic TB patient who washed his medication down with beer. She warned him of the consequences, but his reply was always the same: 'Don't you worry, girl.' She hasn't seen him since he was rushed to hospital a few months ago.

We are riding in Jacqueline's Honda Acura, heading towards Marcus Garvey Boulevard and the rubble-strewn lots of Bedford Stuyvesant in Brooklyn. It is a swampy-hot autumn day, and she is providing us with a field demonstration of 'directly observed therapy', the latest jerry-built weapon in the long-running battle with TB. Her job is to track down a regular clientele of 14 unreliable TB sufferers who hang out in this borough's most inhospitable neighbourhoods. Then she watches them take their medication, and gives them dollars 25 worth of groceries, courtesy of the government.

The next stop on her round is a forbidding housing project in Brownsville, where the elevator reeks of urine and Jacqueline's patient has disappeared. From there we drive half a mile to a crumbling edifice of welfare squalor which features an elevator without a ceiling and a vicious guard-dog in the lobby. Here we meet Ronald Bolling, who has been on methadone for seven years and TB medication for two months, since he caught the disease from his gay lover. In the musty interior of the junk-strewn apartment he shares with a cousin and a pit-bull terrier, Ronald explains that his lover has since died of cirrhosis of the liver and his brother has also succumbed to TB.

We visit the Catholic Church's Bond Street drop-in shelter, a bare linoleum-floored room that houses the prone and mumbling bodies of homeless people who are too insane or troubled to get into to city shelters. We drive past the Armoury, a turreted red-brick former military base which now contains platoons of the homeless. This daily itinerary is a trawl through the social depths, through a succession of lives beset by such monstrous misfortune that Jacqueline's job seems like the equivalent of handing out aspirin in a combat-zone.

'We need a national health-care system in this country,' she says. 'Otherwise, no matter how many people I treat, where's it gonna stop? If you're poor and the medicine you need costs dollars 10, you can't afford it. That's sad.' She twists back to emphasise the point. 'Isn't that sad? Going into these places, seeing how these people live . . . It's not like it's just TB. It's all these other problems they have.'

We arrive at our final destination, a four-storey house at the ruined end of a once beautiful block in Bedford Stuyvesant. Up a dank and darkened stairway, past a diseased dog on the fourth-floor landing, we are ushered into an apartment occupied by Barbara, a 29-year-old welfare mother.

The apartment is chaotic, the epicentre of a life spinning out of control. Parquet floors erupt with gaping holes, trash is strewn about, washing is strung down the hallways, the kitchen and bathroom are filthy and a sofa in the living room has turned a varnished grey from years of accumulated grease and dirt. The TV screen is smeared with so much grime that its images must be barely decipherable.

'This used to be my mother's apartment,' says Barbara, who seems simultaneously embarrassed and baffled by the squalor of her surroundings. She is a tiny, fine-boned woman with short hair, neatly dressed in blue jeans, black top and red thongs. Her four kids race into the room, cheerful and filthy and ready to take their daily dose of medication. They've been taking anti-TB drugs since last February, when their mother checked into nearby Kings County Hospital suffering a severe pain in her side and plummeting weight loss.

'My sister had TB in 1989, so that's how they knew what it was,' says Barbara, hugging her nine-year-old daughter. 'They pulled out her record and they told me I had it.' The sister had lived here when she was infected, sharing her germs. 'My sister always took it like some sort of joke,' says Barbara, a 'God Bless' poster looking down forlornly at her from the wall above her. 'She had all the pills, but she never took them.'

Doctors devised a combination of nine drugs that could fight the TB strain Barbara had contracted, by which time her weight was down to 6st. Now, under the watchful daily gaze of Jacqueline, she is taking her medication every day, making sure her children do the same. Her chances of recovery are good.

Back out on the footpath, Jacqueline recalls how she has told Barbara repeatedly to clean up the apartment, get rid of the mangy dog on the landing and throw out the belongings left behind by her TB-infected sister. But Barbara seems paralysed by inaction, exhausted just by the effort of getting her kids schooled and fed and back home safely. Jacqueline looks down the street and wonders where Barbara's sister got to. She is also supposed to be taking her TB medicine, but she's a wild girl with a taste for crack and no fixed address. She is somewhere out on the streets of Brooklyn, a young woman carrying around an old plague. -

(Photograph omitted)