An Ill Wind in New York : TB Has Returned to Haunt a City Grappling With Poverty, AIDS and a Fragile Health Care System

NEW YORK —  Tuberculosis has turned up with such force in Gustavo Linares’ body that it has gnawed tiny holes through his lungs, reduced him to 115 pounds and left the once-strapping New York City policeman isolated in a hospital room with a mask over his face.

An ex-Marine, Linares may never be well enough to move back to Queens with his wife and 11-year-old daughter. He may never regain hearing lost as a side effect from his medicine. And he may never be cured. He is 36 years old and believes he caught the disease one winter while corralling the homeless into shelters.

“Too bad I didn’t listen,” he says, his voice lost in a clot of fluid. “I didn’t always take the medicine like they told me. I would feel better in a few weeks, then stop. . . .”

Linares pauses mid-sentence to turn his face toward the window, as if to make room for the air he hopes will constitute his next breath. On the seventh floor of Bellevue Hospital, a behemoth public institution, Linares has a rare private room and a dramatic view of the East River. Most days, he is flopped on the bed, alternately watching television and helicopters floating across the river, carting executives to the Big City.

“I know I’ve done a lot of things wrong,” he says, referring to his habit of stopping and starting his pills, which left him resistant to first-line drugs. “I’m wasting away like they used to . . . in the old days.”

Tuberculosis, a disease that shaped the face of New York from its architecture to its water fountains--and that was on its way to extinction--is back with a vengeance.

Rates are soaring. The city Department of Health counted 3,520 new cases in New York last year, a 38% increase over 1989 and a 132% leap over a decade ago. About 200 people die every year, and the number is steadily climbing.

While rates in Los Angeles, Miami and Houston also are rising, New York now accounts for 15% of all U.S. cases. Its overall incidence rate of 50 cases per 100,000 persons is five times the national average.

And those are the sick people the city is counting.

In a recent interview, Kenneth Ong, a deputy health commissioner, revealed that the city Tuberculosis Bureau has just finished a study that shows it is not tracking at least half of the drug-resistant cases. The bureau also is trying to estimate how many people are resistant to the most effective drugs. It may be as many as 1 in 4.

“It’s a disaster,” Ong says of the exponential growth of drug-resistant cases.

The TB Bureau was one of the few departments that received extra money from City Hall last January to hire workers--but it has been unable to spend it as a result of Byzantine bureaucracy.

“It’s too complicated,” says Ong, putting his head in his hands. “Suffice it to say, I’ll believe that we’re getting new people when I actually see them in the flesh.”

Still, he may just get those new people. The wild growth of drug-resistant cases has City Hall nervous, mostly because experts say half the people it strikes are not curable.

In fact, drug-resistant TB has become a terrifying mistral among the city’s poorest, where the disease has always festered. Now, with health care workers and people like Gustavo Linares getting it, the turbulence is moving into the working class.

This summer, an announcement of an outbreak of the drug-resistant disease in three New York hospitals and one in Miami magnified the crisis. Eight health care workers were among the 147 people discovered to have the disease; all but six patients and one health care worker were also HIV-infected. Fifty-one people died.

“TB is a horrendous problem that cuts all across society,” says Dr. Jay Dobkin, an infectious-disease expert who studied TB in central Harlem in the late 1980s. “As with a lot of things, we have this tendency to declare victory and close up our tents. . . . We all talk about the rapid growth of the epidemic, yet not nearly enough is being done to stem the tide.”

Antibiotics and improved hygiene may have come close to conquering the beast, say Dobkin and others. But those remedies did nothing to wipe out the underlying way of life that feeds it, and a flaccid health program has furthered the problem.

Why is this community plague back?

The answer lies with rank poverty, homelessness, the spread of AIDS and a health-care system so vulnerable, so teetering with budget problems and political gridlock, that it can’t keep ahead of a highly contagious disease.

Now, there is even talk of taking old city sanitariums out of mothballs or opening new ones. But, as always, the problem is money. Some doctors are so defeated by overcrowded public hospitals that they are quietly shipping their most desperately ill patients to a Denver hospital nationally known for specialized TB testing.

There are memories in that, and irony.

Early in this century, when 80,000 people died every year of TB, New Yorkers fled the dank city for dry, mountainous spots like Saranac, N.Y., Albuquerque, N.M.--and Denver.

It was in those days that fear of disease shaped building and plumbing codes in New York. Apartments were required to have windows in every room; dumbbell-shaped tenements, creating light wells and air shafts, were required on long, narrow lots. These buildings in Lower Manhattan, as well as exclusive ones like the Dakota in Upper Manhattan, still stand as reminders of “the white plague.”

And water fountains. Until the mid-1920s, a communal cup was hung next to every water spigot. Reformers convinced the city to remove the tin cups as health hazards and to install bubbling fountains.

Prevalent in Shelters

Despite its associations with the salons of the sensitive--Chopin, Keats and Shelley all died of it--tuberculosis shows up in none such lofty settings today.

Rather, it is rampant in crack dens, housing projects and apartments cramped with immigrants from countries where more than half the population carries the TB germ. And it is prevalent in municipal shelters burgeoning with New York’s 24,000 homeless.

Gustavo Linares believes he picked up the disease in a homeless shelter five years ago. “Part of my job as a cop was to pick up people and bring them back to shelters in the winter,” he says. But no one is sure where he got it. He also might have contracted TB as a child in his native Dominican Republic, where rates are high. The germ could have remained dormant until he was older.

Tuberculosis is spread by bacilli coughed, spat, sneezed, talked or sung into the air by a person with active TB. Last year, the city was given a jolt when a local tabloid story suggested one good sneeze on a subway could fell a car full of New Yorkers. But while that is remotely possible, it’s unlikely. It usually takes considerably more contact, such as among family members or office mates or children in a classroom.

In healthy people, the germs can remain inactive for a lifetime. Experts believe as many as 1 million New Yorkers carry the dormant disease. If they take the cure--pills every day for six months to a year--they may never be ill. But the germ can suddenly activate and, like a guerrilla soldier, invade any organ--lungs, brain, kidney--without displaying any symptoms. A person with an immune system weakened by alcoholism, drug abuse, malnutrition or HIV infection is particularly vulnerable. So are the very young and very old.

These days, Dr. Gail Gerena, a chest specialist at Bellevue, is more worried about Linares’ future than about how he contracted the disease.

“I fear he has about a 20% chance of a cure,” she says as she reviews his medical chart. She has come to the nurses’ station near his room to write drug prescriptions. Bellevue has two wards of TB patients, and in the hallway emaciated men wander about in loose pajamas and slippers. Some wear blue masks that are half falling off. Others don’t. When Gerena notices a nurse’s aide wearing a blue mask, she suggests wearing an orange one because it has 1-micron holes instead of 3-micron holes.

“You might as well be wearing nothing,” Gerena warns.

“This is for my psyche as much as my health,” the aide responds. But Gerena, like hospital workers citywide, is worried about infection control, so she calls for orange masks from the supply room before returning to Linares’ prescriptions.

Because Linares is resistant to the first-line anti-TB drugs, isoniazid and rifampin, Gerena is trying out a delicate combination of others. There are 10 drugs that can be prescribed for TB. But most of the second-line ones present problems: high toxicity or unavailability.

Gerena writes prescriptions for varying doses of five drugs that Linares can still tolerate--essentially, a little of this and a little of that. The drug cocktail is given via painful injections.

“I guess this is what you’d call the ‘art of medicine,’ ” Gerena says, sounding regretful. “It’s not just giving the drugs that is important, it’s making the patient comfortable so he can absorb them. You split the doses to reduce the side effects; you get him to lie down or take the pills with food. You do the best you can.”

Health Workers’ Burden

The answer to arresting the epidemic often comes down to the work of people like Louise Daniels, a public health adviser. The city health department employs 60 advisers like Daniels--and has funds to hire more, but the money is more phantom than fact because of budget wrangling in City Hall. That aside, health officials say it’s hard to find college graduates willing to earn an average of only $22,000 a year to do the job.

Meanwhile, Louise Daniels has 90 people with TB whom she is supposed to “manage.”

A lot of her job is roaming the roughest neighborhoods in the Bronx to get people to take their medicine. She has marched into drug dens to nudge a sick addict to see a doctor. She has hung out at a liquor store if that’s a drunk’s favorite spot. And more often than not, she’s outside one of the shelters to catch a homeless man on his way out.

But while people like Daniels are dedicated, it is easy to drop a stitch.

“I do lose people, and it does bother me sometimes, because a lot of the people you lose are the ones who really need to be seen,” she says. “But one person can’t follow 90 people. It’s impossible.”

Daniels’ first contact with TB victims comes in the lab at Bronx-Lebanon Hospital, where she collects their names off reports of positive sputum smears. State law requires hospitals to report them, and doctors complain that the public health advisers aren’t vigilant enough about getting to patients before they’re discharged.

“I have a few patients I bent over backward for to keep them in the hospital, like a little girl--well, she’s 20--who I would bribe with candy and potato chips,” says Daniels, 49. “She’d call me two or three times a week: ‘Louise, I needs this or that.’ I do whatever I can to keep them happy.”

“There’s a lot of ignorance out there about TB, and my job is to educate,” she adds. She spends a lot of time repeating herself to people who think TB is like a horse-and-buggy flashback from “the old country.”

Sometimes Daniels simply has to yell. “I let them run their mouths, and then I let them know if they don’t take care, they’ll die.”

At the Public Clinic

Eleven people showed the other morning at the free TB clinic at Lincoln Hospital in the Bronx. Eleven didn’t. Dr. Karen Brudney says that’s not bad.

So 11 “Typhoid Marys,” as some label the noncompliant, are out there, maybe hot with disease. But 11 also waited on plastic chairs--it’s first-come, first-served at public clinics--to see the doctor. Brudney gives them an arsenal of drugs and advice: Eat better, stop drinking, stop shooting up, get an influenza shot, stop smoking, get some fresh air.

“I know it’s a lot to ask,” she gently tells one particularly febrile patient, “but give it a try.”

That morning, her patients included a female factory worker who moved here from Mexico 19 years ago; two West Africans, both recent immigrants, both taxi drivers, both HIV-infected; a Latino man so feverish with TB that his skin has the color of red wine, and an older American-born woman, a cafeteria worker at the Port Authority.

Mr. T., a 65-year-old alcoholic in a green satin baseball jacket, gets a scolding. “Mr. T., your blood tests are bad,” says Brudney, poking around his enlarged liver as he lies on an examining table. “If you don’t stop it, we’ll have to start the course of treatment for your TB all over again.”

He swears to her he’s not drinking. She swears he is.

But Brudney has seen worse.

In 1988, she and Jay Dobkin spent a year hunting down TB patients at Harlem Hospital, where both doctors then worked. The results of their study were devastating: Of 178 TB patients, 89% were lost to treatment after they were discharged from the hospital. Some were lost two and three times. According to the doctors, that means 159 people were possibly on their way to infecting others--and, most perilously of all, to developing drug-resistant TB.

“You can’t cure ‘em if you don’t treat ‘em,” says Brudney, who now splits her time between Columbia University’s Presbyterian Hospital and the Department of Health, which she and Dobkin concluded was doing a sloppy job.

“People love to blame the TB surge on AIDS, and I’m not saying it is not a factor,” she says, noting that 40% of Harlem’s TB patients have tested positive for HIV and 80% are considered at risk for it. “But the rise in homelessness and the decrease in spending on TB were factors long before the advent of AIDS.”

When told of the results of the study, published this month in the American Review of Respiratory Disease, Deputy Commissioner Ong says he has no doubt the conclusions are true.

“We’re always putting out fires around here,” says Ong. From one day to the next he is shifting health advisers from department to department, depending on that month’s public health crisis, whether it’s syphilis, measles or TB. “I think City Hall is aware of the TB crisis, which explains the extra funding,” he adds. “It’s just going to take time and many more resources to get hold of the problem.”

Yet that’s something New York mayors have long been told they need to do.

In 1968, the city was spending $40 million a year on 21 TB clinics and 1,000 hospital beds designated for TB patients. Although the disease was declining in those days, a task force warned then-Mayor John Lindsay that if hospital beds were eliminated, spending had to be shifted to outpatient clinics.

But by 1978, with the city’s fiscal crisis in full bloom, almost all the hospital beds were gone, spending was slashed and a minimum was assigned to outpatient services.

In 1980, yet another task force warned against apathy. “The resurgence of disease, a bitter reversal of the expected trend, is related to a failure of both health authorities and government at all levels to muster a public health program,” that task force concluded.

Then, in the mid-1980s, the number of new cases began slowly climbing, and by 1987 the federal Centers for Disease Control in Atlanta stepped in. It too did a study. It too delivered a lecture to City Hall.

The CDC found the TB Bureau in disarray. It recommended an improved system for tracking people with infectious TB and called on the city to open sanitariums and locked wards for recalcitrant patients. The federal overseers also advised the city to hire more caseworkers, particularly for supervised therapy--to watch sick people swallow their pills day after day.

Since that report, the city has nearly doubled its TB Bureau budget, from $4.6 million to $8 million, added caseworkers, given them cars and upgraded its computers. A new 85-bed shelter exclusively treats people with TB.

But still, only 60 people out of thousands who need it get supervised therapy. A requirement begun in September, 1990, for students entering public schools to be tested for TB was suspended last month because the city was short of personnel to do the testing. In addition, in the last three years the health department has gone through two commissioners.

And there is a new TB task force.

There is little doubt that this group of doctors and lawyers will report that the same problems exist, along with new ones, and will recommend changes.

Recently, one expert, in a parade of experts who frequently descend on City Hall with fingers pointing and pockets empty, concluded it would cost an additional $15 million to wrestle the TB epidemic back to extinction. But nobody remembers the expert’s name.

Lee Reichman, president-elect of the American Lung Assn., says he’s worried about what it will take for either the federal government or “someone, anyone” to come up with the money.

“AIDS became a sexy problem when Rock Hudson was diagnosed with it,” Reichman says. “With TB, I guess now that health-care workers are getting it, the community will wake up. But I worry how far this will go. This is preventable; this is curable; this is scary.”

TB and the Homeless

”. . . It is evident that there is not any sort of tuberculosis epidemic within the New York City shelter system, nor can it be said that the city shelter system is in any way causing the disease to spread.”

That quote is from the 1989 deposition of a TB Bureau official who was asked by homeless advocates if it was medically unsound to house HIV-infected people in city shelters.

(A healthy person who is TB-infected has a 1-in-10 chance of getting full-blown tuberculosis in a lifetime, while an HIV-positive person has a 1-in-10 chance of getting it within a year.)

But ask any front-line doctor, or any public health adviser or nurse who deals with people with TB, if this is true. In fact, ask Deputy Commissioner Ong about TB among the homeless. “It’s a big problem,” he says, although it’s unclear whether he means among the people who live in shelters or the thousands who find them too repugnant and stay on the street.

Then ask Gary Coles where he got TB.

“One day I woke up in the shelter sweating, with the shakes,” says Coles, a stubby man of 36 who has had a drug habit since he was 12.

Over the last 10 years, Coles has lived in shelters. His doctors say that’s probably where he caught the disease. And he caught a nasty, drug-defiant one right off the bat.

“I never been treated for TB before,” he says, and then starts talking about AIDS, which he also has, and about the fact that he is dying.

At some point this spring Coles stopped being contagious with TB and lived briefly in the city’s 85-bed TB shelter, on the fourth floor of a former psychiatric hospital in the Bellevue complex.

Coles says it was a “dingy, dreary place. It reminded me of a shootin’ gallery. Everybody looks all bummy and on medication, and still they talk about getting high.”

Still, the Bellevue TB shelter is a lot nicer than others around the city that house as many as 900 men in one cavernous room and are choked with the smell of rot and disinfectant.

The Bellevue shelter is heavy on disinfectant, but there are big windows in every room. Usually, there are no more than two or four cots to a room. Every man gets his own narrow gray locker, bedding and three meals a day. The men leave personal items in their rooms. Three oranges and a pair of shoes were on top of one of the lockers. One man kept his own blanket at the foot of his bed.

The only requirement to remain in the shelter through the end of a TB drug regimen is that a man must take his “meds” every morning. If he skips three days, he’s out, says Charles Lucas, the shelter director. “If they’re gone long enough, we refer them back to the general shelter system and they can’t get back in until they’re non-contagious.”

That is, they can get back in if there is a free bed. Today there is a six-week waiting list, and health officials say if they had the money they would open another TB shelter for men, as well as one for women.

In the meantime, Lucas is trying to fix up this place. Over the summer, he got fans to put in every room, but maintenance workers refused to install them and have gone into arbitration with the city in the dispute.

They’re afraid they’ll get TB.

BACKGROUND

Tuberculosis is spread by airborne bacilli from a person with active TB. A person usually gets the disease from a close association, such as a member of the same household. Alcoholics, drug abusers and HIV-infected individuals are particularly vulnerable, as are the very young and very old. In healthy people, the germs can remain inactive for a lifetime but then suddenly activate. Symptoms can include coughing, chest pain, shortness of breath, fever, poor appetite and weight loss. TB is usually treated with drugs for six months to a year; If treatment is stopped, it returns and a person can become resistant to the drugs.