On August 6, 1993, Mayor David Dinkins and the New York City Board of Education announced Operation Clean House, an emergency program to reinspect all 1,069 of the city’s schools for asbestos before the start of school on September 9. No school, they pledged, would open until it was certified “safe.” Thus was launched an effort that consumed tens of millions of dollars and terrified hundreds of thousands of New Yorkers, all to avert a health risk that has not been shown to exist. The entire school system would remain shut down for asbestos abatement until September 20. Three months after Operation Clean House was announced, the initiative ran out of money, having already poured $119 million into emergency abatement. As of early November, operations were still disrupted in approximately 350 schools, and 5 schools remained closed. The school system faced a major crisis of confidence.
On August 9, three days after the start of Operation Clean House, Ernest Faucette, a 46-year-old paroled felon with tuberculosis and AIDS, ignored his doctors’ advice and checked himself out of the TBHIV unit at St. Clare’s Hospital. He immediately returned to the Parole Resources Center, a halfway house for state parolees on East 3rd Street, which had sent him to St. Clare’s six days earlier, soon after his diagnosis of TB. Upon his return, the center dispatched him to the TB Unit at the Bellevue Men’s Shelter. He never showed up and has not been heard from since.
The case received no attention, for there was nothing unusual about it. No-shows are a weekly occurrence at the Bellevue TB unit. Even patients sent from Bellevue Hospital across the street decide they would rather be elsewhere and never show up. Faucette thus joined the hundreds of TB patients who are falling through the gaping holes of the city’s underfinanced TB control program. Their return to the streets is fueling an epidemic that could leave thousands of New Yorkers sick or dead.
Yet while asbestos triggered widespread hysteria, the TB crisis has barely registered on the public consciousness. The city’s expenditures on Operation Clean House greatly exceeded its annual TB budget, which in 1993 rose to $40 million. A comparison of the two crises—one fictitious, the other all too real—is a study in the missteps of government when it allows politics, rather than science, to guide its public health policy.
The history of asbestos abatement in New York City’s schools is one long tragicomedy. The federal government, New York State, and the city all regulate asbestos in the schools; the most influential law is the federal Asbestos Hazard Emergency Response Act of 1986 (AHERA). AHERA mandated that every school nationwide be tested for the presence of asbestos by October 1988—subsequently extended to May 1989. Local school authorities were required to prepare a detailed management plan for each school, mapping the location of asbestos and providing for the removal or repair of asbestos that is damaged or friable (crushable by hand pressure). AHERA also requires a reinspection of all known asbestos every three years.
In New York City, the Board of Education appointed a task force to oversee compliance with AHERA. Its efforts were bungled from the start. The school construction industry is vulnerable to corruption and mob influence, and asbestos contracting particularly so. The initial asbestos tests, costing $3 million, had to be thrown out for inaccuracies. As the May 1989 deadline approached, the testing program became increasingly desperate. The task force hired “inspection engineers” from temporary employment agencies. The contractor, Enviro-Safe (which had almost no prior experience in environmental engineering), raised its daily quota fourfold for the area to be covered by each inspector. Yet three months after the AHERA management plans had been submitted, samples from at least 75 schools were still being analyzed.
Over the next three years, the School Construction Authority, an independent public benefit corporation funded by the state and city to maintain the city’s schools, discovered in the course of routine repairs more than seventy instances of asbestos not indicated in a school’s management plan. Press reports in June 1993 of deteriorated asbestos in Chinatown’s P.S. 1 prompted the inspector general of the School Construction Authority, Thomas Thacher II, and the Special Commissioner of Investigation for the New York City schools, Edward Stancik, to launch an investigation into the accuracy of the management plans. They found inaccurate physical descriptions in all of the two dozen plans they inspected—in one case, the location given for asbestos was outside the building. Three of the two dozen schools, including P.S. 1, had exposed asbestos, deemed an “imminent hazard” under state law.
Thacher and Stancik presented their findings to Dinkins on August 5. A memorandum accompanying their report called the asbestos situation “one of the most extraordinary matters to come before either office in terms of its potential public health and safety ramifications.” But in the final two paragraphs of the 11-page memorandum, they tried to put the situation in perspective:
Finally a note of caution should be stressed. Although the AHERA reports may be completely unreliable, it does not necessarily follow that every school is unsafe or must be closed. Considerable controversy still exists within the medical community regarding the severity of the threat posed by limited exposure to asbestos. It should be remembered that asbestos exists in most of the city’s residential, commercial, and public buildings as well.
While we cannot afford to minimize the implications of this situation, it would be equally irresponsible to overstate the problem.
This “note of caution” was wholly ignored. From the moment the mayor and the Board of Education announced Operation Clean House, a crisis atmosphere reigned, unchecked by reason or scientific evidence. To have reinspected all the city’s schools by September 9 would have required inspecting 45 a day. During the most frenzied period of the 1989 AHERA inspections, inspectors examined 125 schools a month. Not surprisingly, identical problems arose. Days into the reinspections, officials had to dismiss most of the inspectors because they had been trained by Enviro-Safe, the original contractor. Their checklists of damaged areas where exposed asbestos was most likely were inaccurate. A contractor responsible for 33 inspections was not licensed in New York State, so his inspections had to be redone. But what the inspections lacked in competence and efficiency, they made up for in zeal. Inspectors were ripping up floor tile through late August, at which point lab results confirmed the total absence of risk.
Throughout August, the Board of Education maintained that school would open on time. Only on September 2—a week before opening day—did it acknowledge that this was impossible and vote to delay the opening until September 20. School did officially open on the 20th, but 110 schools remained closed and 90 others were on a reduced schedule. Three weeks later, classes were still disrupted for more than fifty thousand students; 28 elementary and junior high schools remained closed because of exposed asbestos; and another 300 had at least one room closed for abatement. Attendance was down 15 percent in some schools. “We’ve lost children because of this. I don’t know if we’re going to get them back,” a superintendent in Brownsville, Brooklyn, told the New York Times.
The decision to close the schools was not mandated by the law. AHERA does not require that schools be evacuated pending asbestos inspections; schools may be and have been inspected while in session. The federal Environmental Protection Agency, responsible for enforcing AHERA, not only was not advocating closure, it was not even advocating reinspection. The final irony is that the millions already spent have not bought compliance with AHERA.
Since Operation Clean House is using a different inspection protocol, the inspections that are required by AHERA every three years will still have to be conducted in 1994.
The asbestos fiasco resulted from a combination of faulty information, a failure to seek out relevant information, and political cowardice in the face of public hysteria. According to participants in the original discussions, a significant factor in the decision to reinspect and abate all schools before September 9 was the Board of Education’s initial claim that only 83 schools had significant damage. This figure would soon prove to be howlingly incorrect, as inspectors uncovered more and more damage. But even if the board’s original estimate had been accurate, the goal of reinspecting all of the schools in little over three weeks seems fanciful. (Getting a straight answer from the board was not helped by the fact that in August it was bitterly divided over the search for a new chancellor.)
The mayor’s promise that no school would open until it had been certified as safe strongly implied that absent such a certification the schools could pose an imminent danger to health. But the mayor and Board of Education never called upon the advice of outside medical and scientific experts in making their momentous decision to keep the schools closed. In fact, a consensus has been growing in the scientific community that the risk from asbestos in buildings is trivial. The doses of asbestos fibers that may have caused cancer in miners and shipyard workers (who also smoked heavily) earlier in the century vastly exceed the doses in buildings. The level of airborne asbestos in most buildings is no higher than that found outside. A 1990 paper in Science magazine found that chrysotile—the white asbestos used 95 percent of the time in the United States—poses no health risks to people who do not actually handle asbestos for a living. In an unpublished September 1993 letter to the New York Times, 17 scientists and medical researchers wrote that “unless it can be demonstrated that the airborne levels of asbestos in New York City schools greatly exceed all of the data on building levels of asbestos published to date . . . the risk to schoolchildren is a non-problem.” Children faced greater risks out of school from crime, fires, and car accidents than they would have if they had started school on time while the inspections proceeded at a more orderly pace.
The real engine behind the asbestos program was not scientific evidence but pressure from parents who were threatening boycotts if the schools were not reinspected before opening. Parent groups demanded, and got, representation on the Operation Clean House oversight committee chaired by First Deputy Mayor Norman Steisel. They brought along their own medical experts who claimed that asbestos was a “horrible problem,” according to Tom Rousakis, Stancik’s spokesman.
Public officials took a calculated risk: if the inspections could be finished before September 9, it would not matter if they were in fact unnecessary. Says one high-ranking official on the oversight committee:
The health risks were not adequately focused on. We initially believed that we could deal with the political and health crisis and accomplish the political need of building confidence in parents. Everyone at the time said: “Maybe this is more than what is needed, but let’s not ask the kids to return to school based on what medical experts say. You can’t ask parents to listen to some medical expert from Mt. Sinai; let’s give them what they want.”
Meyer Frucher, a trustee of the School Construction Authority, echoes this assessment. Telling the truth regarding risk, he says, “doesn’t work”: “It’s difficult to convince parents that asbestos in the classroom is not a hazard when they see guys in moon suits coming in to remove it.”
But the failure to publicly address the scientific and medical aspects of the problem at the very onset locked city officials into a costly and unnecessary course of action. When it became apparent that the inspections could not be completed before the school year began, it was a little late to argue that there was really no risk in attending school for a few weeks pending inspection.
Dispatched to ward off a fictitious crisis, however, the School Construction Authority’s asbestos workers discovered a very real one: the deterioration of the city’s schools. For years, the Board of Education had cut its maintenance budget to fund operations; layers of red tape also impeded the efficient use of repair funds. As a result, many of the city’s schools are decrepit; this was the cause of the vast majority of exposed asbestos. “The tragedy is that we have spent a staggering amount of money to chase asbestos, while not improving one whit the physical condition of the schools,” says one official of the School Construction Authority. “Is this worth $100 million, or should we have tried to reason with the public about the health risks?”
In contrast with asbestos, tuberculosis is a real public health crisis: a communicable disease that, in an increasing number of cases, cannot be cured. Like ex-convict Ernest Faucette, who disappeared after failing to show up at the Bellevue TB Unit, a large portion of TB patients are failing to complete their treatment. Not only do such patients continue to spread the disease, but they become breeding grounds for drug-resistant strains of TB. The more times a patient aborts treatment, the more drug-resistant his infection at each new flare-up. That means that TB is no longer 100 percent curable with antibiotics. An estimated one in three new cases of TB in New York City is resistant to one drug; one in five is resistant to many.
The rate of new tuberculosis cases in New York City—52 per 100,000 people and rising—is already three times the rate considered epidemic by the federal Centers for Disease Control. Only in the Third World are infection rates comparable. In Central Harlem, the rate is 240 per 100,000; among prisoners on Rikers Island, even higher. The official number of new cases citywide in 1992 was 3,811. Some experts argue, however, that this is a conservative estimate; the real number, they say, is between 7,000 and 8,000. And no figures are kept on the prevalence of TB in the population—that is, the total number of cases, both new and ongoing.
Normally, tuberculosis is treated by administering two to five pills daily or several times a week for six months to a year. Patients with drug-resistant TB often must take more than a dozen pills and a shot every day for two years; side effects include serious nausea, hearing loss, dizziness, and psychosis. These medications merely weaken the TB organism; they do not kill it. Surgery may be required to drain fluid from the lungs, or to kill germs by collapsing or even removing a lung. Treating an infection resistant to two or more drugs costs more than a quarter-million dollars a year for each patient; the fatality rate is 50 percent.
There are several reasons for New York’s current epidemic. The city’s once-extensive TB treatment system was decimated by decades of federal and local budget cuts. Officials failed to heed warning signs that TB was again on the rise. And in a crisis that requires flexibility, coordination, and the ability to respond quickly to change, New York City’s government is instead fractured, slow, and hidebound. “In a public health emergency, you can’t wait months to get a contract approved, only to be told that you can only hire New York City residents,” says one health official.
But the most significant factor in the current crisis is the makeup of the patient population itself. Contemporary TB is “symptomatic of the breakdown in our ability to take care of our social problems,” argues Dr. Robert Fullilove, associate dean for community and minority affairs at the Columbia School of Public Health. “It is a biological process fueled by social factors.” Those factors are homelessness, AIDS, drug addiction, criminality, and mental illness. The city estimates that between 20 and 30 percent of TB cases are homeless; this could well be an undercount. Nearly half of those with TB are known to be HIV-positive; immune-system breakdown greatly increases the likelihood that an infection with the TB germ will lead to an active case of the disease. Drug use increases the chances of TB transmission and of failing to complete treatment; because TB medication interacts adversely with methadone, many addicts stop medicating themselves. The city Department of Health estimates that between 15 and 20 percent of the inmates in the city’s correctional system are infected with TB; each year an inmate spends in prison more than doubles his risk of contracting the disease. And mentally ill patients are among the least likely to complete treatment for TB.
The populations most susceptible to TB are precisely those most likely to escape the safety net or to get as far away from it as they can. A Columbia School of Public Health study attempted to track the mental and physical health of 1,200 shelter residents after they left the shelter. Two years later, the researchers could locate only 200 of the original cohort. The elusiveness of many TB patients makes them particularly difficult to reach for “directly observed therapy” (DOT), the preferred method of ensuring that patients complete treatment. Under this form of therapy, a caseworker observes the patient taking his medication each day until the entire course is completed. There are currently more than 1,300 TB patients enrolled in DOT in New York City. The city Department of Health estimates that without DOT, some 40 percent of patients with active TB would have “difficulty” completing treatment. DOT is practiced both in outpatient programs and within prisons and other institutions, where noncompliance is a serious risk in the absence of supervision. Before Rikers instituted DOT, workers there would find hundreds of discarded TB pills littering the grounds.
But for DOT to work, one must locate the patient. If a TB patient is homeless or otherwise living on the fringes of society, this is a daunting task. Caseworkers spend their day hunting down clients in soup kitchens, shelters, and crack dens. New York’s TB control system also loses patients when they move between institutions. The prison and the city hospital systems, for example, do not interlock. Although prisoners who enter the Infectious Disease Unit at Rikers are immediately given a card listing the health care available in their community, the director of the unit, Dr. Eran Bellin, says he has no idea how many prisoners actually go to the clinics after being released. Montefiore Medical Center, which operates the Rikers unit, receives no funding to follow its prison patients after their release. Only when a former inmate shows up in prison again (almost an inevitability) is he again ensured care—but treatment usually has to start from scratch and is likely to encounter greater drug- resistance.
Prisons are disgorging large numbers of infected inmates back into the community with little or no follow-up. Robert Allen, a DOT caseworker at the Bellevue Men’s Shelter TB Unit, says Rikers Island is Bellevue’s biggest source of no-shows. “When the [prisoners] get free, they want to hang out,” he says. “The only thing we can do is wait and hope.”
When Ernest Faucette first showed up at the Parole Resources Center, he was in “extremely deteriorated medical condition,” according to Dr. Wendy Krevisky, the center’s clinical director. He was unable to participate in the employment programs that are the center’s raison d’etre and instead spent his days taking the bus to Harlem Hospital for medical tests. “Whenever we put our foot down with Parole and tell them not to send us sick patients without also sending the medical personnel to treat them, they tell us that 90 percent of their population are sick,” Krevisky says. “Parole is under pressure to empty the prisons; they are not selective about who they let out.” Indeed, though Faucette was denied parole in June 1992 because there was a “reasonable probability that he wouldn’t live in the community without violating the law,” he was let out anyway less than a year later, simply for having served two-thirds of his sentence for grand larceny.
Even if institutions found the resources to accompany their clients from one treatment setting to the next, getting them to their destination is no guarantee that they will stay there. Many patients do what Faucette did at St. Clare’s TB-HIV unit: check themselves out against medical advice. Others simply walk out unobserved. The number of such patients who leave the hospital prematurely is rising: up from 20 percent in 1992 to 33 percent in 1993.
Concern for patient confidentiality impedes the effort to track patients. “We need more sharing of information,” argues Dr. Steven Safyer, the medical director of Montefiore Medical Center. A private hospital, Safyer notes, cannot get a prisoner’s medical history without his consent. Patients often show up at different hospitals with different names, and doctors are usually unable to find out if their patients have been in drug therapy—information relevant to estimating the likelihood of noncompliance with TB treatment.
Dr. Thomas Frieden, director of the city’s Bureau of TB Control, and Dr. Margaret Hamburg, the Dinkins administration’s commissioner of health, receive high marks from the medical community for turning around years of neglect in the TB control program. But the city’s system of outpatient care remains far from adequate. New York’s nine chest clinics (down from 21 in the 1960s) log 171,000 visits a year. Patients wait hours to be seen. Dr. Barry Bloom, a professor of microbiology at Albert Einstein College of Medicine, says international TB experts “can’t believe what goes on in New York’s chest clinics.” In other countries, doctors try to find out about the circumstances of a patient’s life in order better to structure a treatment regimen; at the city facilities, Bloom says, “patients aren’t talked to.”
Delays are pervasive throughout the system. If a patient is tested for TB in an emergency room, he can wait up to ten hours upon his return visit to have the test read. Many never come back at all. It took the city more than two years to replace broken X-ray equipment in its clinics. During that time, patients were sent across the city to other clinics where the equipment might be functioning. The city’s public hospitals once had chest clinics; now few do, and those that exist operate erratically. My own efforts to find out when the chest clinic at Elmhurst Hospital was open were wholly unsuccessful. Elmhurst serves a large number of immigrants; a non-English-speaking patient would have a much slimmer chance of tracking down care.
There is widespread agreement in the medical community that to increase treatment completion rates, the city must first of all improve the delivery of health care. “A noncompliant patient represents not just the patient’s irresponsibility, but a public irresponsibility as well,” Bloom argues. For patients whose lives already teeter on chaos, existing impediments to obtaining treatment often prove insurmountable. Many doctors also support the idea of providing homeless TB patients with housing, so as to facilitate the delivery of DOT.
But doctors are just as adamant that the city also must be willing to detain persistently recalcitrant patients. While the majority of noncompliant patients might become compliant with more available health care, there will always remain a hard core of patients who resist even the most accessible treatment and must be quarantined. “At some level the city should be fixated on this small but important group,” Bellin says. But he questions whether the city has the “will and ability” to exercise its authority to quarantine.
Dr. Safyer of Montefiore Medical Center echoes Bellin’s assessment. “We haven’t grappled with the hard core; we haven’t solved it as a city.” He is not optimistic that we will: “It’s difficult to get the city to reach conclusions that have risks”—such as the risk of being accused of violating civil liberties.
Indeed, recent revisions of the city’s detention law met with strenuous opposition from AIDS activists. The revisions, adopted in March 1993, clarified the circumstances in which the city can exercise its detention power and provided for the possibility of detaining a patient until he is cured. In the past, patients could be detained only until they were no longer contagious; once released, they often stopped taking their medication and relapsed. Despite the caution with which the revisions were drafted—they give patients a full panoply of due process protections—activists vowed to fight all efforts to detain patients until the city makes health care both more accessible and more “culturally sensitive.”
This position is misguided. In a health emergency, the government cannot wait for utopian conditions before moving to protect the public. If a patient has been persistently noncompliant, the city must act far more promptly to get him off the streets. Often, by the time authorities get around to issuing a detention order, the patient has already disappeared.
Though activists charge that TB is giving closet authoritarians a pretext to lock up AIDS patients, it is more likely that the government’s response to the TB epidemic is inhibited by reflexes honed during the AIDS crisis. “We remain a little bit stuck with the HIV model,” Safyer says. “But TB is not the same disease with the same implications. The risk of breathing is not the same as sharing a needle or having sex.”
Despite advocates’ concerns, there is little chance that the city will start hauling away busloads of recalcitrant patients any time soon. Even if it wanted to, it doesn’t have the facilities for them. City hospitals have no locked isolation units for infectious patients, though Goldwater Hospital has 25 beds in a locked ward for noninfectious patients. In 1991 and 1992, the city signed 44 detention orders, a tiny fraction of the number of recalcitrant patients. Cost considerations alone ensure that DOT will remain the intervention of choice.
The medical community is unanimous in stressing the urgency of the situation. Universal treatment until patients are completely free of infection “must be achieved right away,” argues Dr. Bellin of Rikers. “If TB spreads much more, it won’t be treatable.” To come even close to the goal of 100 percent completion of treatment, New York needs to increase its army of DOT caseworkers, expand and improve its outpatient services, and develop more effective ways of tracking patients.
TB control, says Bellin, is the “ultimate in communal activity; everyone is one huge organism.” Unfortunately, New York City’s body politic is already reeling from social problems. The medical response to the TB epidemic will be of limited efficacy as long as so many of the city’s residents continue to fall out of the social order.
Crises, Real and Imagined
The asbestos and TB crises have a common root in government neglect and mismanagement. For years, the Board of Education gave school maintenance short shrift, allowing buildings to deteriorate to the point that many had exposed asbestos. Over the past two decades, New York’s TB control program was gutted, officials looked the other way as rates of infection rose, and the social problems that engendered the current epidemic continued to fester.
The city responded forcefully though foolishly to the asbestos problem when New Yorkers came to believe their children were in danger. In contrast, though TB control efforts have been markedly improved over the past few years, they remain inadequate. The public has not yet recognized tuberculosis as a health emergency because most TB victims arc marginal members of society. But unless drastic action is taken, TB may soon pose an immediate threat to the health of all New Yorkers. The asbestos “crisis” was a phony one. The TB crisis, in contrast, is real—and deadly.