Abstract
This essay focuses on the use of the concept of “arrest” in Hansen’s disease (leprosy) in the United States in the early to middle part of the 20th century, as well as the transformations the concept underwent with the arrival of sulfone drugs and the implications of these changes for patients and public health officers. An “arrest” was a therapeutic outcome characterized by a long course of treatment, noncontagiousness, a very small chance of reactivation, and a need for postdischarge maintenance that depended on sociomedical infrastructures beyond the clinic as well as self-imposed lifestyle limitations. The concept of disease arrest shows that experts and laypeople alike have valued therapeutic outcomes other than “cure” that signal certain optimal therapeutic milestones, despite the practical difficulties they imply and despite the fact that they do not promise a return to a pre-illness stage.
About a month before the United States entered World War II, Hansen’s disease (HD, or leprosy) patients at US Marine Hospital 66 in Carville, Louisiana, received a pep talk:
You are all fighting a germ, the cause of your disease. We are on the lookout for better, newer remedies which may act quicker and, as you know, we are testing them out all the time. We are all here with one object in view, and that is to arrest the progress of this disease.1
By the 1920s, disease arrest was an optimal therapeutic outcome in the treatment of infectious diseases, tuberculosis and HD especially, in the United States. The concept of “arrest” conveyed an optimal therapeutic milestone but not the return to a pre-illness stage. The latter is often associated with the concept of “cure,” yet previous scholars have pointed out that even such a definition is more context-dependent than fixed. Gianna Pomata, for example, established how patients in early modern Bologna negotiated the terms of ad hoc “cures” with their physicians as a precondition of payment. Likewise, as Jason Szabo has shown, some 19th-century physicians in Paris, France, defined a “cure” as a pragmatic slowing down of what was ultimately an inevitable progression toward death in illnesses such as severe rheumatism and syphilis.2
As with “remission” in cancer, “control” in diabetes, and even “cure,” the concept of “arrest” did not necessarily translate into a stark and salutary end of the pathological state. As used in the case of HD in the 20th-century United States, “becoming arrested” implied a small chance of the illness becoming reactivated, along with a very strong likelihood of it remaining harmless to the individual and noncontagious to others, provided the person followed certain rules after discharge. Arresting HD, therefore, demanded time on the front end and the acceptance of a new postarrest “normality” to remain healthy.
For patients, reaching the arrest stage posed practical difficulties. Drug regimens took a toll on their bodies and morale but were hard to avoid, rooted as they were in patient demands and in a culture of paternalistic care for a quarantined population. Those for whom the disease was arrested had to contend with a number of postdischarge challenges, including obtaining follow-up medical care locally, securing family support, and battling the stigma of leprosy. For many, the positive identities and robust social networks developed as HD sufferers within treatment communities made becoming arrested a threatening label that could lead to the removal of benefits accrued over time.
The historically thick concept of disease arrest shows that public health specialists and patients in the 20th century valued treatment outcomes other than “cure,” despite their drawbacks. Here I focus on the early use of the concept of HD arrest in the United States, the transformations it underwent with the arrival of sulfone drugs, and the implications of these changes for patients and clinicians. With the novel use of terms such as “functional cures” in the case of HIV/AIDS, it is apparent that therapeutic concepts other than cure remain an important and evolving aspect of medical caregiving.
In US medicine, the term “arrest” was strongly tied to the history of the HD program of the Public Health Service (PHS).3 As of the early 20th century, HD care had occurred in leprosaria in Kalaupapa (Hawaii), Culion (the Philippines), and Carville (Louisiana). The latter, formally known as US Marine Hospital 66, was the only leprosarium in the continental United States, having operated as a branch of the PHS since 1921. That year, Carville had 90 patients. With federal funding, the number of patients increased rapidly, reaching 349 by 1938.4
The incurability, unknown contagion mechanism, and severe stigmatization of HD encouraged the seclusion of patients, who were required to stay unless released by medical authorities. Prior to the 1940s, patients described their agonizing fear of being labeled as lepers, the violent grief of the loved ones left behind, and the social networks disrupted by a confinement of unknown duration.5 Absconding, a symptom of their disaffection, was common through the 1940s. Clinicians did not hide their antipathy for escapees’ “total disregard for relatives, friends, or the public.”6
Compliant inmates were to stay put and take their medicine. As of the early 20th century, preparations based on chaulmoogra oil were the standard treatment worldwide.7 Given the substance’s contested efficacy, however, clinicians supplemented it with other treatments, including neosalvarsan, tryparsamine, mercurochrome, diphtheria toxoid, and heat therapy. Some patients, too, had little faith in chaulmoogra oil and only pretended to take it in its pill form, keeping stashes of the drug to sell to or share with others.8 Patients also sought out nonsanctioned remedies, including willow bark tea and Ex-Lax. Their self-medicating, however, was not free of skepticism. “In Carville,” a patient wrote, “one becomes so prone to grasp at every new ‘miracle,’ until the heart breaks.”9 Still, vigilant of incremental improvements, especially diminishing skin ulcers and thickening, patients appreciated instances of their beating back HD’s symptoms.
In December 1922, the PHS set the first guidelines for discharge from Carville. Patients showing clinical improvement in visible lesions were to be examined through skin scrapings to test for the presence of the HD bacillus. Twelve consecutive monthly negative results triggered a thorough examination by a board of physicians, which could make a recommendation to discharge the patient as an “arrested case” (i.e., “all signs and symptoms” of HD had disappeared, and the patient was no longer contagious).10
Specialists at the time were cool toward the term “cure” for HD. At a gathering in Manila in 1931, worldwide HD experts reached a consensus about avoiding the word altogether, as it could give rise to misunderstandings. For example, a spontaneous subsidence could be mistakenly deemed an instance of cure. The impossibility, at the time, of growing the bacillus in laboratory cultures made it difficult to ascertain the specific effects of antimicrobials. Given these constraints, the aim of treatment should be to restore the general health of the patient, and to remove all active signs of the disease. Thereafter the patient is to be kept under observation for a period of two years, during which active signs must continue to be absent. 11
Although the Carville standard of 12 monthly negative examinations as a prerequisite for disease arrest was more lenient than the international standard, the PHS still informed health authorities in the locales where discharged patients settled. These patients were to submit to clinical examinations every six months for three years after discharge, and those tests had to remain negative during the entire period if the patients’ discharge certificates were to be renewed. In addition to the intrusiveness of this continuous surveillance, life after disease arrest carried the further duty of observing new “rules of life,” particularly the avoidance of physical and mental exertion. A person with arrested HD should know that, unless he avoids dissipation, and other deleterious conditions of life, he faces the danger of a relapse. Know and live within your limited physical capacity. Your disease will then continue in its arrested stage and, if your body still harbors dormant germs, they will remain harmless. 12
The term “arrest” in the early-20th-century United States thus reflected contemporary understandings of HD’s progression and consequences. Largely ineffective treatments contributed to the view that nutritious food, shelter, and isolation from a prejudiced yet vulnerable public made for the best possible care. The difficulty of treating HD, however, did not stop the PHS from developing standards to define a disease arrest or from prescribing postdischarge rules of conduct. On the patients’ side, a robust culture of self-care guided their procuring of alternative remedies, colored their expectations about the kinds of improvement they might experience, and determined their rejection of medical advice in the form of absconding and not adhering to treatment.
Guy Faget, US Marine Hospital 66 Medical Officer in Charge, 1940–1947
Carville welcomed a new medical officer in charge (MOC) in 1940—Guy Faget—whose previous research on the tuberculosis bacillus had familiarized him with the similarities between that germ and the HD bacillus as acid-fast bacteria. Faget began investigating the antibiotic properties of sulfone drugs after the introduction of these agents in the 1930s and continued to do so as Carville’s MOC.13 In December 1940, Faget reached out to Parke Davis director of clinical investigations E. A. Sharpe about a new sulfone, Promin, that the pharmaceutical company had developed and was sponsoring as a possible anti-tuberculosis drug. Faget requested an amount of it for a trial and Sharpe obliged, sending along instructions to administer Promin.14 In return, Faget welcomed Parke Davis observers to Carville, reported results to the company, and advised Sharpe on improvements, such as the desirability of an oral rather than an intravenous version of the drug.
Faget promoted the drug as “one of the latest sulfanilamide preparations,” likely leading to fewer “undesirable effects.” He noted, I will be glad to discuss this treatment with any patient who is interested. We would like to have a group of 10 patients try it. Only those not taking any of the other special drugs will be considered.”15
The first cohort of Promin users grew to 22. Some suffered anemia as a side effect, severe enough to warrant hospitalization. A few more endured painful and fever-inducing erythema nodosum. Five months into the trial, however, Faget was optimistic, as some patients reported “encouraging subjective effects.”16 Two years later, Faget and his colleagues were confident enough to state that the changes they observed “cannot well be explained on the basis of spontaneous improvement alone.”17
The realization of Promin’s effectiveness led to an intense interest in other sulfones in the early 1940s, including sulfathiazole, sulfadiazine, promizole, and diasone. Carville physicians acknowledged the slow and uneven effects of these drugs.18 However, doubts about the overall value of the sulfones ebbed. Promin’s success pushed Carville’s therapeutic culture toward safe and convenient treatment as a means of reaching the arrest stage. Diasone, a sulfone manufactured by Abbott, was well embraced as a step in this direction, given its Promin-like effectiveness and the fact that it could be taken orally rather than intravenously.19 By 1946, Faget had declared the use of sulfones to be “the most outstanding scientific advance made at the National Leprosarium.”20 Two years later, Carville abandoned chaulmoogra therapy for good and focused on sulfones as the treatment of choice, even to the exclusion of new nonsulfones offered for evaluation by other pharmaceutical companies.21
With the value of sulfone therapy established, the criteria for disease arrest changed at Carville. In 1947, in view of the speed with which the sulfones acted on the HD bacillus, the first patients were discharged as arrested after only six consecutive negative bacteriological examinations.22 These patients were to continue taking oral medications (mainly Diasone) and to report to health authorities in their communities for testing on a regular basis. PHS officers’ priorities were set to change as well, with a decreased emphasis on quarantine in favor of early diagnosis and treatment as the best individual and public health measures.23 The greater potential for achieving disease arrest altered health policy aspirations while also creating new organizational needs and patient expectations, some of which went unfulfilled.
Between 1943 and 1948, 132 patients were discharged as arrested from Carville.24 This sign of progress, however, belied a great deal of the complexity involved in achieving the arrest of HD and managing it afterward. Some patients were eager to get to this point and depart, and they succeeded. Others were discharged but were never free of the sequelae of their illness and returned to Carville for treatment when the disease reactivated, and still others would not leave Carville, having grown too sick or too dependent on the institution to do well on the outside.
Despite the possibility of an early discharge, the 12-month standard before declaring an arrest held through the 1940s for most patients. Those who wanted an early discharge had to not only produce six consecutive negative bacteriological examinations but also demonstrate that they had a social network to support their physical limitations, as well as find a physician on the outside willing to treat them with Carville-approved drugs.25
Ideally, local care would also avoid the social dislocation HD patients so feared and reviled. In practice, however, local care access and quality were uneven. For example, Reverend C. E. Olmstead, diagnosed with HD in 1948, was shocked to hear he had to leave his home in Glendale, California, and check himself into Carville within a day. On arrival at Carville, however, he was told that he could have received care locally had the Los Angeles Public Health Bureau been more accommodating.26
Patients such as Gertrude Hornbostel and “R.U.” modeled more successful therapeutic alliances that supported their discharges.27 After two years at Carville and six negative examinations, Hornbostel petitioned to be declared disease arrested in 1948. A physician in New York City agreed to provide follow-up care, and the New York Department of Health offered no objection to her residing in the state as long as she underwent an annual examination, lived “under hygienic conditions,” and avoided taking care of children or ill people.28 With these assurances, Carville authorities declared Hornbostel’s disease arrested and discharged her. R. U. also sought an early discharge. She had been admitted in 1944 and transitioned from chaulmoogra oil to Promin in 1945. In 1948, she made her case for early release to Frederick Johansen (MOC from 1947 to 1953), pointing out that “I am an elderly person and will spend most of my time at home. I do not have to earn my living as my family is financially able to take care of me.” Carville’s board of medical officers approved her request less than a month later.29
Hornbostel and R. U.’s quiet focus on the arrest of their own diseases contrasted with the defiantly activist approach of other patients. After being declared arrested in 1948, following four years of confinement and six consecutive negative tests, Nick Farrel demanded and obtained an early discharge.30 Afterward he traveled to New York City, where he tried but failed to get a publishing deal for his story from Life magazine. He then visited the Detroit, Michigan, headquarters of Parke Davis, where he was featured in the firm’s trade publication as “a Promin graduate of Carville.” Farrel also spoke widely to the press.31
Painting of Carville, LA, Patients Awaiting Promin Injections by Frede Vidar, Commissioned by Abbott Laboratories, 1947
More than simply self-serving, Farrel’s attention seeking must be seen in the context of the assertiveness of a segment of Carville patients led by Stanley Stein. Since the early 1930s, these patients had run the Carville newspaper, The Star. They had also engaged with political, scientific, and popular opinion leaders and campaigned to retire the term leprosy in favor of the less stigmatizing Hansen’s disease. Sulfone therapies emboldened them to demand renewed efforts to educate the public about HD’s treatability and update laws that unfairly and unsoundly singled out HD patients for isolation.32 “Officialdom, no doubt, considers Nick a bit on the radical side,” The Star editorialized, but we, his former fellow-patients, salute him for his unselfishness and bravery in trying to improve a situation which the authorities admit needs correcting but about which they have done so little.33
The evidence from Carville’s medical records shows that, activist or not, individuals’ obtaining arrested status depended not simply on bacteriological tests but also on their capacity to mobilize networks that medical authorities recognized as legitimately supportive of postdischarge needs.34 Furthermore, patients had to remain vigilant about the possibility of their HD reactivating. Carville clinicians first documented this phenomenon in 1950, in six patients among whom the disease had been arrested through sulfone treatment. All had been instructed to continue taking sulfone drugs after their discharge, in smaller doses than they received during active treatment.
Carville staff suspected that patients’ nonadherence to these instructions had caused their relapses.35 Patients’ explanations for reactivation, however, add important nuance. For example, one patient, Marie Guerre, believed her postarrest treatment had not gone far enough to prevent reactivation: In 1947 I broke out again. I left in 1942, and when the medication [Promin] came out they did not contact me. You would have thought, well, why didn’t they send me some kind of, you know, medication?36
Others, such as Nancy Batista, thought that treatment at Carville had gone too far, permanently impairing a full recovery: I think whatever I have is all Hansen’s disease related because I took so many experimental drugs. I don’t know what the side effects were.37
The Carville staff’s efforts to counter the reactivation of HD went beyond drugs. The hospital helped patients plan for life after disease arrest, offering occupational therapy and finding them housing and other public benefits. Patients were grateful for these additional services, and many availed themselves of opportunities to return to Carville for check-ups with eye and orthopedic specialists. For instance, when Betty Martin returned in 1957, 10 years after her discharge, it was clear that this multifaceted and continuous care had improved her outlook on life, despite a short-term flare-up of her HD.38
Carville, LA, Patients in Occupational Therapy During the 1940s (Photo by Carville Patient Johnny Harmon, for The Star)
For some patients, especially those who had been ill with HD the longest, disease arrest was especially difficult to achieve and maintain. Some became arrested thanks to sulfone treatment but had to be readmitted multiple times over several years owing to reactivation of the disease. Others, despite disease arrest, suffered from a host of health problems and disabilities, including diabetes, cardiovascular disease, chronic gastritis, and severe nerve damage to the hands, feet, and eyes, all incompatible with discharge. These factors, which particularly affected those who had developed HD before the introduction of the sulfones, meant that in some cases staying at Carville was the only humane alternative.39
A special category of patients troubled medical authorities: those who became arrested and, despite being judged capable of remaining well after discharge, refused to leave the leprosarium. The problem was familiar to physicians long before Promin. The attitudes of PHS officers toward these “reluctant negatives” were tolerant in the 1920s and 1930s.40 By the 1950s, however, Carville MOC Edward Gordon (who served from 1953 to 1956) aimed to narrow the institution’s mission to achievement of disease arrests. His second in command, Rolla Wolcott, announced that all discharged patients able to do so would leave the hospital in 1954.41 The news set off a frenzy of worried speculation among patients for whom Carville had become a home, as well as a prison. Many of the oldest residents had constructed altogether new identities as HD patients, adopting new names, sometimes marrying other patients, and building houses on the Carville grounds. To them, becoming arrested was a double-edged sword that threatened the upheaval of lives painstakingly rebuilt.42
Patients met with Wolcott and Gordon in January 1954 to demand to stay at Carville after arrest. Able-bodied arrested patients, Gordon countered, had a duty to leave when discharged. C. M., a patient, insisted, “How about getting Congress to give something to patients disabled by experiments?” He compared HD patients with prisoners who agreed to experimental treatments in exchange for perks such as shorter sentences. Gordon’s response echoed Carville’s 1920s policies regarding treatment evaluations, which acknowledged patients’ fortitude in submitting to treatment but never emphasized their freedom to refuse it: “When a person has a disease and is given medication that the doctor earnestly thinks will help him, that is not experimental.” Gordon thought it shameful that patients “don’t mind accepting charity from the federal government” after disease arrest. “We do not consider our hospitalization charity,” patients retorted.43
Angry exchanges continued, fueled by the intransigence of both patients and the administration and framed by the rising number of arrested HD cases, which made the maintenance of a facility such as Carville increasingly cost-ineffective. Tensions lowered only with the appointment of a new MOC, Edgar Johnwick (whose term spanned the years 1956 to 1965), who announced that patients would not be sent away from Carville against their will. At the same time, Johnwick set the stage for the transformation of the leprosarium into a voluntary treatment facility.
In the late 1960s, Carville staff began a retrospective study of Faget’s original 22 Promin patients. HD had become permanently inactive for only nine of them. Moreover, after treatment lasting between three and 15 years, eight of them had been infected with sulfone-resistant bacilli. Thus, although asserting the superiority of Promin over chaulmoogra oil, the report confirmed that arresting HD with sulfones was a difficult and lengthy endeavor.
Tantalizingly, the report called for “a whole new approach to chemotherapy” given the sulfones’ slow action and the emergence of bacterial resistance.44 It was precisely in the late 1960s that two new antibiotics began to be combined with dapsone (the parent compound of the effective sulfone drugs). Clofazimine and rifampin became the two new prongs of multidrug therapy (MDT) for HD.45 So effective was MDT at rendering HD patients noninfectious and preventing reactivation that the World Health Organization began recommending it in the 1980s and launched a campaign to make it available worldwide in the 1990s.
By 2016 Margaret Chan, director of the World Health Organization, had retired the term “arrest,” calling MDT “the first game-changing breakthrough” that offered “a complete cure” for HD.46 Despite these advances, several cases of HD are still reported—although quickly controlled through MDT—in the United States every year.47 Furthermore, MDT offers little to those burdened by HD-related disabilities, those who relapse, or those who must continue to take anti-inflammatory medications for years after being declared “cured.”48
The clinical and social transformations ushered in by the development of sulfones challenge the view of MDT as “the first game-changing breakthrough” against HD. More importantly, however, the story of HD’s arrest shows that therapeutic outcomes other than a “cure” have been legitimate and desirable for clinicians and patients in the treatment of infectious diseases in the United States since at least the early 20th century. Disease arrest was one of these outcomes, and it was characterized by a long course of treatment, noncontagiousness, a very small chance of reactivation, and a need for maintenance that depended on sociomedical infrastructures beyond the clinic as well as self-imposed lifestyle limitations. “Arrest” can be classified alongside therapeutic concepts such as “remission” and “control” that laypeople and experts continue to aim for despite practical drawbacks.
More recently, the HIV/AIDS literature has also contributed to this category, with concepts such as functional cure. AIDS researchers have voiced skepticism about the short-term likelihood of producing a “sterilizing cure” that removes all traces of HIV from the body, an attitude that would have resonated with 1930s HD specialists, for whom the HD bacterium proved a challenging microorganism to eliminate. In the present context, a more realistic aspiration has emerged to produce a functional cure for HIV: an outcome in which the virus could still be found via laboratory assays but plasma viremia would be undetectable even after interruption of antiretroviral therapy.49
Although a functional cure for AIDS still lies in the future, social scientists have begun to study patients’ participation in cure trials and their attitudes toward an eventual functional cure.50 The case of HD offers complementary insights based on concrete historical experiences in treating a formerly incurable and severely stigmatizing infectious illness, much as AIDS is today.
The achievement of disease arrests in HD highlights themes both familiar and novel in HIV cure research, such as the importance of standard setting in microbial detection as constitutive of a functional cure, which draws attention to the institutional and national power dynamics that make some clinical standards more persuasive than others; the posttreatment establishment of systems of surveillance and medication supply, which become routinized for many individuals even after they have been declared healthy and noncontagious; management of the expectations of patients in treatment, including the exhortation to embrace lifestyles compatible with the durable suppression of an illness; and the concomitant study of the broader social factors (e.g., racism, poverty, gender-based inequalities) that impede people’s adherence to medical regimens and self-care. All of these practical areas of concern were already familiar to leprologists in the middle part of the 20th century but lead to questions we will have to address in light of our 21st-century circumstances.
See also Weisz, p.
ACKNOWLEDGMENTS
This project was funded through grant 1R01AI108366-01 from the National Institute of Allergy and Infectious Diseases. I gratefully acknowledge this support.
Many thanks to Elizabeth Schexnyder for her invaluable help navigating the archives of the National Hansen’s Disease Museum, to the AJPH reviewers and editors for their recommendations, and to Helena Archer, Adam Gilbertson, Gong Ni, and Alice Zhang for their research assistance.
