Plagues in World History (20 page)

ated by consumption running rampant through a family, giving rise to the belief that one of the deceased was now preying on the remaining members who were sickly but still alive. Part of this ritual apparently included a healing rite in which the ashes of the suspected vampire were fed to the ailing family member in the hopes that this might yet save his or her life. In at least one instance, that of Mercy Brown of Exeter, Rhode Island, whose months-old body was violated in March 1892 in an attempt to save her brother, Edwin, who likewise was to succumb to tuberculosis, this ritual occurred almost exactly ten years to the day from when Koch had announced his discovery of the bacterium that was truly sucking the life force from consumption victims.21 On my own farm in Vermont, one can still see the traces of such desperate attempts to escape tuberculosis when walking in the woods, only to suddenly stumble upon abandoned stone walls and cellar holes that stand like ghostly sentinels to their former inhabitants’

retreat halfway up the mountain in search of healthier air.

The romantic disposition of tuberculosis stands in evident contrast to that of plague and smallpox, and also of cholera. The reason for this is not hard to find: I believe it can be traced back to the physical symptoms of each disease. We have already seen how bubonic plague and smallpox can cause horribly painful and disfiguring eruptions on the body; both diseases can also be terrifyingly swift and sudden in their assault on the body’s defenses. We will also see that cholera is devastatingly rapid in its progression and produced symptoms that were particularly repulsive to nineteenth-century Western sensibilities. By comparison, tuberculosis could lie hidden and dormant, scarcely noticed by the victim, for years, and, when and if it did finally emerge from its latent phase into a virulent one, it typically caused the “pale, wan, frail look” (hence the name by which tuberculosis was commonly known, the “white plague” or the “white death”) that actually was admired and aspired to by fashionable beauties for at least the first half of the nineteenth century. Even the most visible symptom, the coughing up of blood, could apparently be discreetly hidden, until perhaps the very end, by a strategically placed handkerchief. Thus, tuberculosis was, for much of its romantic history it seems, the perfectly acceptable disease from which to die. The interconnectedness of the clinical and societal aspects of tuberculosis illustrates the fine line to be drawn between positivist and relativist interpretations of disease.

The latest chapter in the history of tuberculosis, which is still being written, is the emergence within the last few decades of epidemics of a multi-drug-resistant strain of the disease (known by its acronym as MDR-TB), and now an even extensively drug-resistant variety (XDR-TB). This is when TB bacteria, which are hard to kill because of their waxy coating, develop resistance to one or more antibiotic drugs by means of genetic mutations. (Keep in mind that hundreds of millions of these bacteria are usually present in a victim.) Such a scenario arises 96 y Chapter 3

only when treatment regimens for TB fail to eliminate all bacteria that have been exposed to the drugs being used (which is said to be usually the fault of the doctor rather than the patient). Any number of circumstances may be responsible: the patient does not complete the full course of treatment (the usual “short course” of a combination of TB drugs lasts six to nine months); the doctor prescribes the wrong or insufficient dosage of drugs to correctly treat the patient’s TB; the drugs have been manufactured badly (such as in a form that cannot easily be absorbed by the patient or with not enough active ingredient); or treatment centers, particularly in Russia and the third world, do not have enough drugs to allow patients to complete their recommended course. In essence, the patients now become an incubator for a far more deadly form of the disease than before they started treatment, and they can now pass this form on to other victims. It is perhaps no coincidence that, at the very same time that MDR-TB was arriving on the scene during the 1980s, a frightening, new disease called AIDS

started taking its toll, which, as we will explore in more detail in chapter 6, destroys the body’s immune system; AIDS makes it easier for the patient to not only contract TB but also become an incubator of MDR-TB. (Currently, tuberculosis is the most common “opportunistic infection” that actually kills off patients with AIDS.) As the first decade of the twenty-first century comes to a close, the World Health Organization (WHO) reports that a third of the world’s population is currently infected with TB, with one new person becoming infected every second, and that 5 to 10 percent of those infected will go on to develop an actively virulent form of the disease. As of 2005, southeast Asia had the highest number of cases, nearly three million, or 34 percent of the world’s total, followed by Africa with two and a half million, or 29 percent of all cases globally; it is no accident that these places also have some of the highest incidences of AIDS. TB strains resistant to at least one antibiotic drug have been documented in every country surveyed by WHO, and strains that are resistant to
all
major antibiotic drugs have by now emerged. More usually, MDR-TB is defined by WHO as strains resistant to the antibiotics isoniazid and rifampin; it is most prevalent apparently in the former Soviet Union.22

The case that is usually cited in the literature to illustrate the current MDR-TB crisis is an epidemic of both regular and MDR tuberculosis that occurred in New York City from approximately the mid-1980s to the mid-1990s.23

At the height of the epidemic in 1992, New York had nearly four thousand TB

cases, comprising 14 percent of all cases in the United States, a third of which were MDR-TB, comprising 61 percent of those in the country at large. Moreover, 23 percent of patients contracted MDR-TB without ever having been treated before, proving that the drug-resistant strain was spreading independently of its “home-grown” origins, and over 40 percent of New York’s TB pa-Tuberculosis y 97

tients were also infected with AIDS. Whereas TB infection rates had previously been falling or holding steady, the number of cases tripled in that one year. Yet, most see the origins of the crisis as going back to the 1970s, when the U.S.

Congress stopped setting aside money solely for fighting TB and allowed states to spend it at their discretion. In most places, including New York, other priorities took precedence out of a sense of complacency that epidemic TB was a thing of the past, a victory celebration that proved premature.

Eventually, New York City’s TB epidemic was brought under control, largely through a policy known as directly observed therapy (DOT), in which patients complete their drug course under supervision, and which has now been adopted by WHO as its preferred method for treating TB. For MDR-TB, this strategy must be tailored to the patient by first testing to determine which drugs the bacteria are immune to and then prescribing specific second-line drugs against them, a regimen known as DOTS-plus (the acronym stands for directly observed therapy short course). Using the DOTS technique, New York City’s health department was able to reverse the poor compliance rates for completing treatment, which had stood at less than half of all patients at the height of the epidemic and in some places, such as Harlem, was as low as 11 percent. By the mid-1990s, compliance rates were now at 90 percent and cases of MDR-TB saw a correspondingly dramatic decline, down 91 percent.24

But this remarkable achievement came at a price, and not just in monetary terms of the one billion dollar price tag for the program; although most patients completed treatment voluntarily, after signing a contract agreeing to do so that was sweetened with incentives such as free medications and food and transportation coupons, a tiny minority—forty-seven patients in all—had to be coerced into completing treatment by being detained in special wards at hospitals, such as the twenty-five-bed facility at Goldwater Memorial Hospital on Roosevelt Island. New York City’s health code was amended in 1993 to allow for such detention in cases of active tuberculosis where it was deemed there was a “substantial likelihood” that the patient might transmit his or her TB to others and would not complete treatment, based on “past or present behavior.” Some argue this was nonetheless a “sensitive solution” since patients had the right of appeal and were even provided free legal counsel; moreover, the mere threat of detention was perhaps a persuasive tool for voluntary compliance, thus obviating the need for enforcement in many cases, although no hard evidence has been produced to this effect.25 However, others insist this was an unprecedented infringement of liberties, since it was based on the principle of noncompliance rather than an immediate and quantifiable threat to the public health, as was the previous standard with all mental illnesses and other contagious diseases, and since less restrictive alternatives were not tried beforehand.26

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Historical parallels have been drawn with comparable dilemmas in the past, such as the infamous “Typhoid Mary” case, in which the New York City health department forcibly detained an Irishwoman, Mary Mal on, in quarantine at a hospital on North Brother Island for the last twenty-three years of her life between 1915 and 1938 because she was a healthy but highly infectious carrier of typhoid fever. Although some might consider Mary’s fate to have been cruel, she did infect a total of fifty-three people (three of whom died) during her career as a cook.

(Typhoid, like cholera, is spread through contaminated feces, which Mary would have had on her hands since hand washing was not widely practiced at the time.) After her first period of incarceration from 1907 to 1910, Mary was granted her freedom despite a court ruling that upheld her detention in the face of a habeas corpus legal challenge filed by a lawyer on her behalf; her release was on condition that she sign an affidavit promising to cease employment as a cook, a condition she subsequently violated under an assumed name (at a hospital, no less). Yet, there is more to Mary’s case than simply the biological issue of protecting the public from deadly germs, for it does not explain why hundreds of other healthy carriers besides Mary were al owed to go free, including a “Typhoid John” in the Adirondacks who infected thirty-eight victims, two of whom also died. An indefinite, involuntary detention of a healthy person as a public health threat was in fact unprecedented. It seems that the New York board of health was determined to make Mary an example of how someone who was in perfect health could nonetheless be a walking carrier of disease; Mary’s misfortune was simply to be the first such healthy carrier to be so identified. Moreover, as a single, female, sexual y active, working-class Irish immigrant with a physical y imposing presence who refused to cooperate with authorities or even admit she was a carrier, Mary also posed a social threat to contemporary preconceptions of acceptable feminine behavior; she certainly did not get along with George Soper, the sanitation engineer who first tracked down Mary and who came from a middle-class, Protestant, educated background, almost the exact opposite of hers.27

If we go just a little further back in history, we have already seen that Britain’s attempts to take extraordinary measures to combat plague in its empire in India at the turn of the twentieth century encountered widespread opposition among the native population there, to the point that they were rendered almost counterproductive (chapter 1). This was partly the result of a lack of conviction that these efforts were truly effective and partly because they ran counter to traditional cultural values and domestic sensibilities. It could be argued that, in this day and age, transmission of a disease like tuberculosis is far better understood and that modern Western culture is far more accepting of the authority and encroachments of medical science into our daily lives. The courts, press, and the public at large all, with few exceptions, seemed to endorse NYC health depart-Tuberculosis y 99

ment’s drastic actions taken ex officio to combat MDR-TB, the threat of which seemed to far outweigh any constitutional objections that might appeal to tender consciences. But we must remember that only a few people on the margins of society were directly affected; what would happen if large numbers from mainstream society had to be coerced, and if close family members had to be separated in the process? Although such scenarios might be the fodder for simulation exercises and Hollywood films, they have yet to be tested in the real world.

Despite New York City’s success story, the way forward in the campaign to eradicate TB is far from clear. Not everyone, for example, is enamored of the DOT approach; in Russia, which has the third largest number of MDR-TB

cases in the world, largely owing to its severely crowded prison system that serves as an incubator for the disease, there was much cultural resistance to DOT until relatively recently. This was because many in the Russian Ministry of Health were convinced of the necessity to go back to the old, Soviet method of treating TB, which operated on a ponderous, case-by-case basis that relied primarily on X-ray diagnosis and surgery.28 Perhaps for reasons of sheer national pride, Russia’s reluctance to adopt DOT was not overcome until 1995, and even then universal, countrywide application of DOT was not to be achieved until 2007. Not coincidentally, it was not until the last decade that the growth rate in number of new TB cases has finally slowed in Russia. Yet, problems remain, including ineffective detection and notification of new cases, poor compliance and success in DOT administration, spectacularly high TB

rates in prisons (where overcrowding and poor air quality conditions remain despite attempts at reform), and considerable coinfection with HIV (human immunodeficiency virus).29

Others suggest that DOT demands an allegedly too “paternalistic” and “authoritarian” approach to compliance for some cultures and that alternative treatment methods should therefore be considered, such as voluntary administration of “fixed-dose drug combinations” (which presumably would encourage completion of treatment through the ease of taking just one pill).30 Developing and getting new drugs to market that may be effective against TB is often a challenge when drug companies see “a high investment with little commercial return,”