politics of leprosy segregation in japan: the emergence, transformation and abolition of the patient...

Social Science & Medicine 56 (2003) 2529–2539

Politics of leprosy segregation in Japan: the emergence,transformation and abolition of the patient segregation policy

Hajime Satoa,*, Minoru Naritab

aDepartment of Public Health, Graduate School of Medicine, The University of Tokyo, Hongo 7-3-1, Bunkyo-ku, Tokyo 113-0033, JapanbNational Sanatorium Tama-Zenshoen, Tokyo, Japan

Abstract

The segregation of leprosy patients, a practice introduced early in the 20th century, was maintained in Japan after

World War II. It locked in the viability of subsequent policy choices, and patients’ isolation was sustained long after it

was proven to be scientifically unnecessary. For leprologists and leprosarium directors, there was little opportunity to

conceptualize and test the epidemiological validity and effectiveness of outpatient services as alternatives to the existing

policy, since most of the patients were already hospitalized. Since leprosy was no longer a threat to the general public,

bureaucratic officials, as well as legislators, lacked strong incentives to reformulate the overall policy. Within the

Ministry of Health and Welfare, daily tasks were largely transferred to the section for leprosarium management, and

the search for other options lost importance. For patients, long institutionalization elevated their dependency on life in

leprosaria. These conditions must be emphasized as policy legacies, the results of past policies, since they posed

obstacles to effective policy innovation in accordance with changing scientific knowledge. To make policies reflective of

scientific knowledge, it is essential to understand and foresee the effect of policy legacy, when introducing and

appraising public health policies.

r 2003 Elsevier Science Ltd. All rights reserved.

Keywords: Leprosy; Hansen’s disease; Policy; Politics; Japan

Introduction

Leprosy is a chronic infectious disease caused by

Mycobacterium leprae (WHO, 1966). The disease has

been known since ancient times: The origin of the word

leprosy dates back to Greek and Latin (Lendrum, 1952).

Over a long time period, the disease can be disfiguring,

and society stigmatized victims of the disease. This

attribute is deeply discrediting since the stigmatized

individual is disqualified from full social acceptance.

Leprosy was thus dreaded not because it killed but

because it left one alive with no hope (Jopling, 1991;

Valencia, 1989). After Armauer Hansen’s discovery of

the bacteria in 1873, the disease became feared as a

contagion, and segregation was recommended for

prevention. The advent of effective drugs in the 1940s

drastically changed the course of disease, and in many

countries patient segregation was deemed unnecessary

and terminated. However, some countries that once

practiced patient segregation/isolation experienced diffi-

culties in changing their policies, abolishing leprosaria

and reintegrating the patients into the community

(WHO, 1970). As a result, prolonged policies institutio-

nalized patients for a period longer than scientific

knowledge justified.

Assuming a linear and rational relationship between

policy and science, although it sometimes might not be

the case (Miller, 1999), policy makers continuously

review existing policies, identify potential policy options,

and decide among them, guided by good evaluative

information. They are expected to choose the best policy

alternatives on the basis of tested ideas borrowed across

time (from previous experiences) and space (from the

experiences of governments in other settings) (Rose,

*Corresponding author. Tel.: +81-3-3816-4751; fax: +81-3-

3816-4751.

E-mail address: [email protected] (H. Sato).

0277-9536/03/$ - see front matter r 2003 Elsevier Science Ltd. All rights reserved.

PII: S 0 2 7 7 - 9 5 3 6 ( 0 2 ) 0 0 2 8 5 - X

1993). This is a form of social learning, namely a

deliberate attempt to adjust the goals or techniques of

policy in response to past experience and new informa-

tion (Hall, 1993). When social learning does not

function, policy becomes incongruent with science, and

may unjustly inflict adversity on those affected by it.

However, it has been pointed out that science, as

reflected in experience and information, does not solely

determine policy (Shapiro, 1991). Moreover, science and

policy have sometimes dialectical relationships: Their

development and social functions can be mutually

dependent (Berridge & Stanton, 1999). It is necessary

to explore the local and chronological contexts in which

policies and sciences were developed and operated to

understand key factors which set and modify them.

This study aims to examine the history of leprosy

control policy in Japan, focusing especially on the

political aspect of the introduction, maintenance and

eventual abolition of patient segregation. It then seeks to

elucidate the opportunities for and obstacles to policy

innovation, in this case the abolition of the long-

standing patient segregation policy. The paper argues

the importance of reckoning well the influence of policy

legacy, the results of past policies, to facilitate the

process of policy innovation.

History of Leprosy Control Policy in Japan

Period I (1868–1911): Emergence of leprosy control

Norway led other countries in the development of

leprosy control policies: St. Joergens Hospital in Bergen

was established as a leprosarium in the 15th century. A

leprosy research center was completed in 1849 and a

national leprosy registry in 1856. When Mycobacterium

leprae was discovered by Gerhard Henrik Hansen in

1873 and leprosy proved to be a contagion, the seclusion

of patients in their homes or in hospitals was advocated

for disease prevention. The 1877 Law declared that

impoverished lepers who were unable to work and

thereby maintain themselves would be hospitalized on a

voluntary basis. Following Hansen’s proposal, however,

the Law on the Seclusion of Lepers of 1885 further

dictated enforced isolation: all leprosy patients must

either be isolated in separate rooms in their homes or

admitted to the hospital, if necessary with the help of the

police (Gussow, 1989, pp. 67–84). Although isolation

measures remained relatively mild in their enforcement,

Norwegian researchers concluded that isolation played a

considerable role in bringing about the decline of leprosy

in the country (Irgens, 1973).

In Japan, many lepers wandered around and lived in

both towns and rural areas sometimes making colonies

of their own. After the establishment of the Meiji

government in 1868, the advent of a modern state in

Japan, private organizations, mainly religious institu-

tions, provided care and support for leprosy patients in

some areas (Yamamoto, 1997, pp. 25–38). In 1893, 20

years after Hansen’s discovery, a translation of his book

On Leprosy (Hansen & Looft, 1895) was published in

Japan. The disease had been regarded as a hereditary

disease, and the view that it was a contagion became

known gradually, first among the medical experts, and

then among the public. Around the same time, the

Mission to Lepers in India became the Mission to

Lepers of the India and the East, and expanded its

territory to China and Japan: It made a contribution to

the promotion of leprosy care in Japan (Browne, 1974).

A few Japanese scholars attended the first Interna-

tional Conference about Leprosy (ICL) in Berlin in

1897, and its resolution led them to support patient

segregation (Balina & Valdez, 1994). Inspired by reports

from the Conference, Dr. Kensuke Mitsuda, then a

young physician, opened a leprosy ward in the Tokyo

Yoikuin Hospital (Mitsuda, 1950; Sawano, 1994).

Before long, treatment of leprosy as a contagion became

more common among physicians. Following the first

ICL, Dr. Albert Ashmead, foreign medical director of

the Tokyo Hospital, also insisted on the necessity of

absolute isolation. He deplored the fact that there were

thousand of lepers, forming a horrible subgroup in the

miserable millions of outcasts, beggars, and persons

exercising loathed professions (Ashmead, 1897). Subse-

quently, in the Diet, legislators began to argue that laws

and regulations should be erected to require leprosy to

be handled properly as a contagion. The first national

survey on leprosy was conducted in 1904, and those

running private leprosaria organized a committee,

lobbying politicians and businessmen. Gradually, poli-

ticians accepted the idea of leprosy control, and drafted

a law (Yamamoto, 1997, pp. 41–64).

Proposed as a Cabinet bill, Law No. 11, the Act on

Leprosy Prevention, was passed in 1907. Officials in the

Ministry of Internal Affairs (MIA) explained that

despite the mild infectiousness of leprosy, Law No. 11

was required for the sake of floating lepers, those

without means of support who could not be cared for at

home, and consequently posed a threat to community

safety (Hayashi, 1979, pp. 41–43; Inoue, 1960). Admin-

istrative officials in the health ministry, though they did

not fully agree that all leprosy patients should be

segregated nor did they consider it possible to institu-

tionalize all of them, conceded that some public

institutions would be necessary to provide floating

lepers with care (Table 1). The Law stated that, when

possible, patients should be taken care of at home.

When those who could be treated at home were

hospitalized, their (living) expenses were to be paid by

their families. Subsequently, in 1909, an Order was

issued by the MIA to apply to leprosy the same

disinfection and prevention measures as for cholera.

H. Sato, M. Narita / Social Science & Medicine 56 (2003) 2529–25392530

Table1

MajoreventsandprogressaroundleprosycontrolinJapan

Periods

International/foreign

Domesticacademia

Domesticsanatoria

Patients’associations

Legislators(Diet)

HealthMinistries

1868–1911

1856Registry(Norway)

1865Colony(Hawaii)

1873Mleprae

discovered

18971stICL(Berlin)

19092ndICL(Bergen)

1893‘‘Leprosy’’

translated

1873Private

sanatorium

(graduallyincreased)

1899Publicleprosy

wardopened(Tokyo)

19095publicleprosaria

(1880Preventionof

ContagiousDiseases)

1907LawNo.11;Ban

onforeignleper

entrance

19021stLeprosysurvey

1909MIAOrderNo.

45,andAssociation

oflocalpolice

directors

1912–1945

19233rdICL

(Strasbourg)

(1943Promineffects

publishedintheUS)

1928JLAestablished

1941JLAconfirmed

leprosycontagion

1915Vasectomystarted

1916Punishmentcode

1926Dischargecode

1931Nationalsanatoria

1944Patientlabor

(1931Leprosy

Prevention

Association)

1931Leprosy

PreventionLaw

1920Leprosaria

ExpansionPlan

1925Admission

widened

1929Noleprosy

movement

1946–1959

19513rdPAHO

Congress

19531stWHOReport

andLucknow

conference

1956MOM(Roma)

19587thICL(Tokyo)

1948Promineffects

reportedbyJLA

1952Testimony&

reports

1951Officialdischarge

started/reported

(Dischargeincreased)

1947Patientsmovement

1948Patients’

Federation

1952Petitionto

reviselaw

1948National

EugeneLaw

1953RevisedLeprosy

PreventionLaw

1949National

Leprosaria

ExpansionPlan

1952Temporaryleave

permitted

1953/6MHW

Notice&Code

1956Supportprograms

fordischarged

patients

1960–1988

1961OkinawaHD

PreventionLaw

19638thICL(Riode

Janeiro)

19663rdWHOreport

1981WHOreport

onMDT

1961OPclinicopened

1967–1974Opinionsto

abolishsegregation

sporadically

manifested

1983Symposiumon

leprosycontrol(JLA)

1965Guidelinefor

leprosycontrol

(administrators)

1976Draft-billtorevise

theLeprosyControl

Law

1987Petitiononthe

lawrevision

1963Petitionfor

lawrevision

1964/75Protestagainst

inpatients’labor;

Petitiontoimprove

theirlives

1985Studygroupon

thelawissue

(1968Dietmen’s

GroupforHD

controlformed)

1972Temporaryleave

informallybecame

free

1979Renameleprosy

toHD

1989–1996

1992WHO44thWHA

199467thJLACongress

1995Official

apology(JLA)

1994Opinionto

abolishtheLeprosy

PreventionLaw

1991Petitiontorevise

thelaw

1995Supportto

lawabolition

1996ActtoAbolishthe

LeprosyPrevention

Lawof1953

1992Studygroupon

HDprevention

(TofuKyokai)

1995MHWStudy

Group

HD:Hansen’sdisease,MDT:Multidrugtherapy,ICL:InternationalCongressabout/ofLeprology,MOM:MilitaryOrderofMalta,PAHO:PanAmericanHealthOrganization,

WHA:WorldHealthAssembly,JLA:JapaneseLeprosyAssociation,MIA:MinistryofInternalAffairs,MHW:MinistryofHealthandWelfare.

H. Sato, M. Narita / Social Science & Medicine 56 (2003) 2529–2539 2531

At the same time, five public leprosaria were established

whose directors were recruited from ex-directors of

police or prisons (Yamamoto, 1997, pp. 64–103).

Period II (1912–1945): Development of leprosy control

Because of the failure of compulsory segregation to

stamp out or materially reduce the prevalence of leprosy

within a reasonable period of time, the prophylactic

value of uniformly applied compulsory segregation

gradually came into question overseas. It became known

that compulsory segregation had only been applied to a

few indigent cases, and that subsequent milder modified

compulsion has reduced leprosy in Norway. Compul-

sory segregation was also quite impossible to implement

in many areas for administrative and financial reasons.

The international community therefore came to recom-

mend that early bacteriologically negative (early non-

infectious/open) cases be treated without compulsory

segregation (Balina & Valdez, 1994; Rogers, 1931).

In Japan, however, Directors of public leprosaria and

politicians called for the expansion of the leprosaria,

arguing that many of the leprosy patients, even those

receiving care at home, were not in good environments

for their treatment and for disease prevention. The first

national leprosarium was opened in 1931, and Law No.

11 was revised to the Leprosy Prevention Law, which

allowed all patients, whether they could be cared for at

home or not, to be hospitalized without any financial

burden levied on their families (Yamamoto, 1997, pp.

122–218).

Furthermore, as a consequence of nationalism during

the war period, voluntary organizations and local

governments launched the No Leprosy Movement in

1924, which tried to find all leprosy patients and send

them to the leprosaria. The MIA and its successor, the

Ministry of Health and Welfare (MHW), supported this

movement and at the same time, nationalized all of the

existing leprosaria so as to coordinate their activities.

Ministerial officials issued manifests arguing that

leprosy should and could be eradicated from Japan by

promoting absolute segregation (Inoue, 1960; Yoshina-

ga, 1965). In accordance with the increasing institutional

capacity of leprosaria and the social movement, the

number of lepers sent to leprosaria increased consider-

ably, which reflected vicissitudes in enforcing the law

(Tofu Kyokai, 1958a). With scarce resources available

during the war time, patients who were strong enough

were assigned maintenance chores, including the treat-

ment and care of other patients (Hayashi, 1979, pp. 196–

200; Yamamoto, 1997, pp. 109–121).

Although opinions among academics were not neces-

sarily unanimous about the necessity of absolute and

indiscriminate segregation (Otani, 1993, pp. 83–96), the

MIA and a majority of leprologists agreed with or

condoned the existing policy (Narita, 1996, pp. 28–29).

The effects of promin, a class of sulfone drugs which was

discovered to be effective to the disease in the US, were

not yet well known in Japan.

Period III (1946–1959): Succession of pre-war control

policy

With the discovery of sulfones at Carville, leprosy

entered the age of chemotherapy. The Rio de Janeiro

Conference in 1946 reported advances from the intro-

duction of the sulfone group of drugs (Ryrie, 1948).

Since the relative infectiousness of the two types of

leprosy had been measured by epidemiological studies,

which demonstrated the very low infectiousness of the

tuberculoid type, experts insisted that only open

(infectious) cases required isolation (Lechat, 1981;

WHO, 1953). Acknowledging the inefficiencies of

disease control by patient segregation and hospitaliza-

tion, the conference committee on epidemiology and

control then designated a leprosarium as a place for

isolation of infectious patients and for noninfectious

patients to live for social, economic or other reasons. In

the early 1950s, patient isolation became more and more

criticized and gradually condemned at the following

ICLs, and other international conventions (Balina &

Valdez, 1994; Bechelli, 1971). Finally, the 1961 ICL in

Turkey declared compulsory and indiscriminate segre-

gation an obstacle to the development of a leprosy

control program (FNLP News1, July 1, 1956; Anon-

ymous, 1962; Saikawa, 1999).

In Japan, a new government was established after

WWII. Legal systems were thoroughly reviewed and

revised in compliance with the new Constitution. People

became aware of their civil rights, which led to the

launch of all sorts of citizens’ movements. In 1947,

patients in leprosaria filed their petitions to improve

their lives by abolishing work requirements for patients

and securing minimum standards of living (FNLP, 1977,

pp. 37–40). As soon as the dramatic effects of promin

were reported from overseas and its clinical trial was

started in Japan, they organized the Patients’ Federation

(Federation of National Leprosarium Patients [Zenkoku

Kokuritsu Rai Ryoyojo Kanja Kyogikai], FNLP) and

launched lobbying activities to acquire the drug. The

Diet in response approved a budget for sulfones in 1950,

and a year later, 35 patients were first officially

discharged as a result of their improvement (FNLP,

1977, pp. 34–36, pp. 70–71). Nonetheless, although the

MHW acknowledged the possibility of changing its

segregation policy, the Ministry was still devising a plan

to expand leprosaria capacity to hospitalize leprosy

patients (Saikawa, 1999, pp. 124–125).

1FNLP News (Federation of National Leprosarium Patients

News [Zenkankyo News]) is a bimonthly newsletter published

by the FNLP.


In 1953, the Leprosy Prevention Law was revised.

Despite patients’ vehement protests, it essentially

reflected the arguments of the experts, maintaining the

legal basis for compulsory isolation of patients proven

to have bacilli, prohibition of leave without permission,

and punishment of the inpatients who disturbed the

peace (FNLP, 1977, pp. 41–62; Yamamoto, 1997, pp.

278–312). As with the previous Law, the new Law did

not incorporate any clear standard procedure for

discharge or make provision for outpatient treatment.

Nine supplementary resolutions were adopted, in

response to patients’ pleas, which included the provision

of living stipends and patient work, improvement in

living conditions, promotion of research, and installa-

tion of rehabilitation facilities. Accordingly the MHW

initiated programs for patient rehabilitation (MHW,

1975). However, the official position toward isolation

did not change substantially: Japanese officials main-

tained the practice of patient isolation. The Notice of the

Vice-Minister, issued soon after the promulgation of the

Law, still described isolation as the only reliable means

for prevention. A tentative standard for discharge was

officially detailed in 1956, but it was not intended to

facilitate discharge (Otani, 1996, pp. 154–184, pp. 217–

222). In practice, about 500 patients were admitted or

readmitted to leprosaria in 1956, while fewer than 100

were discharged (Tofu Kyokai, 1958b).

Period IV (1960–1988): Transformation of control policy

Following the advice that isolation of patients should

be limited to open cases, the abolition of compulsory

isolation was repeatedly recommended by WHO and

UNICEF (WHO, 1960, 1966; Hasselblad, 1971). Defini-

tion of the cases suitable for temporary isolation became

gradually envisioned (Davey, 1978; WHO, 1970). By

1970, sulfone drugs became the treatment of choice for

leprosy (Boudreaux & Faria, 1971). The limitations of

the monotherapy approach, including drug resistance,

could be overcome by a multidrug therapy (MDT)

approach (WHO, 1982). The international trend toward

leprosy management on a outpatient basis firmly took

root. Not only in foreign countries, but also in the US-

occupied territory of Japan was this shift toward

outpatient treatment introduced in 1961, the Legislature

of the Government of the Ryukyu Islands, then under

the auspices of the US army, took a major step when it

passed the Hansen’s Disease Prevention Act. Its provi-

sion stated that the Chief Executive may advise

hospitalization and may also order an improved patient

to leave the hospital (Anonymous, 1966; Saikawa, 1975).

Acquainted with the international recommendation

that most leprosy patients should be treated on an

outpatient basis, thus abolishing compulsory isolation,

the Patients’ Federation in Japan repeatedly voiced

support for revision of the existing Leprosy Prevention

Law. They insisted that the Law, which aimed to

eradicate leprosy through forced segregation, was no

longer justifiable, lacked a scientific basis and violated

human rights. They also argued that they were victims of

enforced segregation and of social stigma fostered by the

Law. Patients organized a study group to discuss the

revision of the Law and frequently visited the MHW

with petitions (FNLP News, July 15, 1963).

In 1963, the Patients’ Federation filed its petition on

the revision of the Leprosy Prevention Law of 1953,

sending more than 200 patients to the Diet and the

MHW. They again requested abolition of compulsory

examination and isolation, systematization of medical

care and rehabilitation for leprosy, and promotion of

outpatient leprosy treatment (FNLP News, April 1,

1964). The Chief of the Section for Tuberculosis and

Disease Prevention in the MHW, who was then in

charge of the overall leprosy control policy, first planned

to make an official study group on leprosy prevention to

discuss a law revision. However, this plan was canceled

in the Ministry. Officials thought that transition of

leprosy control to an outpatient basis could restructure

or abolish the existing leprosaria, forcing existing

inpatients to reenter society, and felt that both sides,

patients and society, were not well prepared (FNLP

News, April 1, 1965; Konishi, 2000). It was also felt that

the transformation of leprosaria from medical facilities

to rehabilitation facilities would be difficult because

of budget constraints (FNLP News, May 1, 1963;

Nishiura, 1968).

Although some patients still lamented the Law, most

agreed that under the existing regime there already was

and could be a more liberal interpretation of some of the

rules. In practice, patients were almost completely free

to leave their leprosaria and their absences were not

strictly punished (Narita, 1996, p. 24; Saikawa, 1999, pp.

162–163). In 1976, when the Federation of Leprosarium

Directors drafted a revision proposal which incorpo-

rated clear discharge codes, and then submitted it to

patients for their consideration, the Patients’ Federation

objected to the proposal based on the concern that the

adoption of clear discharge codes could result in forced

discharge (FNLP News, April 15, 1976; Narita, 1996,

pp. 22–24). As was seen in the 1960s, many patients

remained hesitant to address the issue of law revision,

and their movements then focused more on compensa-

tion for low-wage patient labor and the long-term

compulsory segregations of the past (FNLP News,

December 1, 1976).

A decade later, in 1984, the Patients’ Federation

created a committee to examine revision of the Law, but

continued to be concerned about the fate of leprosaria as

their adopted homes (FNLP News, June 1, 1984;

September 15, 1985). Consequently, the Federation of

Leprosarium Directors decided that leprosaria should

not be abruptly discontinued as many of their residents


were already too old to leave (Shimada, 1987). Since the

number of newly diagnosed cases was only about 40 per

year, most sanatorium residents were patients who had

been living there for a long time. In the 1980s, 150–200

patients were admitted or readmitted annually with

fewer than 30 patients discharged (MHW, 1983).

In the MHW, the Section for National Hospitals and

Sanatoria endeavored to improve living conditions in

national leprosaria in response to repeated pleas filed by

patients, and discussion in the Diet. Medical staffs were

increased, patient labor was gradually reduced or was

made more rewarding, and government allowances were

increased for leprosaria and their patients (Otani,

1996, pp. 252–254). The Section for Tuberculosis and

Adult Diseases, and later the Section for Tuberculosis

and Intractable Diseases, which was assigned to super-

vise and coordinate the overall leprosy policy under

the Law, however, remained uninvolved in discussions

about the revision of the Leprosy Prevention Law.

Officials did warn the patients of the possibility that

the numbers and sizes of leprosaria could be reduced

as part of administrative reform if revisions to the

law were implemented too quickly (FNLP News, June

15, 1984).

Period V (1989–2000): Abolition of leprosy prevention

law

Because of the optimism that developed as a result of

MDT, the 44th World Health Assembly, which met in

May 1991, adopted a resolution to eliminate leprosy as a

public health problem by the year 2000, and defined

elimination as attaining a level of prevalence below 1

case per 10,000 population (Noordeen, 1994, 1995). In

many countries, leprosy lost its status as the Cinderella

of diseases. Most patients live in their own communities,

and where facilities exist, can be diagnosed, often quite

early, and can receive effective treatment and be cured

with no residual disabilities (Noordeen, 1991; Sriniva-

san, 1994).

The stalemate in policy change in Japan began to end

when Fujio Otani became the Director General of the

Tofu Kyokai Foundation, which was established as

the Leprosy Prevention Association in 1931, renamed

the Tofu Kyokai Foundation in 1952, and continued to

serve patients with leprosy. In 1992, the Patients’

Federation petition was filed with the Minister of Health

and Welfare, although many patients still worried about

the fate of their leprosaria (FNLP News, June 1, 1991).

In the following year, the Tofu Kyokai Foundation was

officially consulted by the Ministry on the prevention

policy for leprosy. A committee was started, composed

of leprologists, medical experts, lawyers, media persons,

bureau officials and patients, and presided over by Otani

(Otani, 1996, pp. 280–283). At the meeting with patients,

he argued that the whole Law should be abolished if its

core element, namely the isolation policy based on the

(presumed) infectiousness of leprosy, is removed from it

(Otani, 1994). He was sensitive to the patients’ fear of

losing their adopted homes when the abolishment of the

law would demonstrate that existing leprosaria had been

scientifically unnecessary. This would lead eventually to

their reduction or abolishment (FNLP News, October 1,

1989), but finally Otani persuaded the patients to go

ahead with him.

Otani was of the opinion that in order to get over

the legislative hurdles necessary to abolish the Law, the

opinions of key actors should be in agreement with the

prospective report of his committee. He tried to appeal

to public opinion by establishing the Museum of

Hansen’s Disease (MHD) and hosting a series of

symposia about the policies on Hansen’s disease (HD)

(MHD, 1995a, b). In 1994 at the 67th Congress of the

JLA, Otani held a special lecture and stated that the

existing Law should be abolished since it was not

scientifically justifiable and violated patients’ human

rights. He also stressed the idea that medical care,

welfare and social security should be provided for

existing patients when HD control is incorporated into

general public health measures (Otani, 1996, pp. 285–

287). Six months later, the Federation of Leprosarium

Directors and the JLA publicly reconfirmed Otani’s

opinion (JLA, 1995; Tofu Kyokai, 1995).

Upon the release of the report by the committee on

HD prevention policy in 1995, the MHW organized an

internal panel of experts on the abolishment of the

Leprosy Prevention Law. This panel, again chaired by

Otani, subsequently submitted its report which recom-

mended the abolition of the Law, continuous provision

of public support for existing patients, and the use of

the term Hansen’s disease in place of leprosy in laws

and regulations (Otani, 1996, pp. 350–382). Finally

in 1996, the MHW drafted the Act to Abolish the

Leprosy Prevention Law. It aimed to abolish the 1953

Law and at the same time to codify the government’s

responsibility to provide existing HD patients with

continuous medical and other social services. It was

also decided that patients could either leave the

leprosaria or stay there as long as they wished, and that

those who decided to come back to the leprosaria

after their discharge could be readmitted (Iwao &

Choda, 1999). The Minister of Health and Welfare

expressed his apology in the Diet that the government

was responsible for being delinquent in reappraising

the existing Law and taking appropriate actions

(Choda, 1996; Otani, 1996, pp. 394–413). The Act was

passed in the Diet on May 27, and took effect on April

1, 1996.

At the time of the abolition of the Law, there were

5413 patients in leprosaria, whose average length of stay

was more than 40 years with their average age being 72

years old (MHW, 2000).


Discussion

This study demonstrates that the segregation of

leprosy patients was introduced in Japan soon after

the disease was found to be contagious, but maintained

long after it became known that patient isolation is not

necessary in the majority of cases. Segregation or

isolation of leprosy patients was advocated and justified

in the language of science and public health. However,

its abolition was not always easily accomplished solely

by advances in scientific knowledge. Especially remark-

able was the stagnation of policy in the post-war period.

The resultant preservation of the isolation policy

provided patients with some social support, but

continued to confine them to leprosaria and officially

deprived them of their civil liberties. The policy as an

authoritative statement could also embody and foster

the social stigma that the disease is a dreadful contagion,

maintaining a hurdle to patients’ reintegration into

society.

This issue can arise in diseases other than leprosy.

Despite medical advances, such as the development of

vaccines and antibodies, medical experts still consider

quarantine an option in certain instances (Fallone, 1988;

Gregory, 1988). Some form of quarantine, both

complete quarantine and isolation, could still be

declared legitimate in virtually every declaration and

covenant of human rights (McCall, 1993). This, how-

ever, would require exhaustive procedural protection to

meet the necessary standard. Quarantine measures may

raise challenges based on their procedural and sub-

stantive protections. The length of any quarantine

should not last longer than necessary to prevent the

spread of the disease. In this process, human rights or

civil liberties of the patients are to be weighed against

their isolation, in addition to its effectiveness and

efficacy. In the case of leprosy segregation, there was

an ostensible lag between policy change and scientific

advance.

Looking back at the evolution of leprosy control

policy in Japan, policy windows were opened less

by scientific advances than by other factors, although

expert opinion certainly affected the course of action.

It is also questionable whether scientific knowledge

was fully developed and utilized to terminate isolation

policy. To keep policies reflective of an ever-chang-

ing science requires continuous monitoring of scientific

advances and assuring its input to be effective. While

the scientific base and the political will to translate

it to policy are necessary ingredients required to

induce policy changes (Richmond & Kotelchuck,

1991), both of them have their own difficulties in being

fulfilled in many cases (Miller, 1999; Terris, 1981). It

should be noted that promotion and use of scientific

research also depend on the existing policy (Jasanoff,

1990).

Disease control and patients’ welfare

Quarantine measures aim to protect the health and

safety of the public, and individual liberty is subordinate

to the common good (Reilly, 1993). Parens patriae, the

obligation of the state to act as parent of the country in

caring for those who cannot care for themselves, is the

other side of the duty of the state to protect the rest of

the community from infected individuals (Mindes, 1995/

1996).

In the early periods, the social visibility of lepers and

the activities of voluntary organizations put the issue on

the agenda. Leprosaria were established in Period I, and

expanded in Period II with nationalistic support.

Leprologists, such as Mitsuda, served as activists and

catalysts. The government spread the view that leprosy

was a dreadful contagion, and a diagnosis of leprosy was

promptly followed in all instances by removal to

leprosaria. Patient isolation was nearly completed in

this second period with the focus of policy shifting from

patients’ welfare to disease control. Then, in Period III,

Constitutional change provided an opportunity for law

revision. The pre-war Law was brought to discussion for

reappraisal. Although the effectiveness of sulfones was

known overseas, Japanese experts clung to the segrega-

tion policy. Their early experience instilled the firm

notion that leprosy, the sequelae of which could be

miserable, was so intractable that segregation and

quarantine were the only reliable means to control the

disease. Although some patients were still young enough

to start new lives outside leprosaria, the government

kept the pre-war policy practically unchanged. Disease

control continued to take priority over patients’ welfare.

After the law revision in 1953, patients and the MHW

did not fully advocate revising the Law for a long time.

Concerned that law revision could eventually harm

patients’ welfare, they paid more attention to securing

and improving the leprosaria and other benefits.

Through the loose enforcement of the Law, the

leprosaria and the MHW did not rigidly limit patient

leaves, vacations, and even escapes. However, the policy

under the existing Law was administered on the premise

that leprosy requires confinement and special care, and

therefore it was also limited in its capacity to compel

patients to leave the leprosaria. Continued legitimation

of patient isolation promoted patients’ stay in leprosar-

ia. This time, the preservation of law was implicitly

justified to secure the places for patients’ welfare. Lack

of outpatients’ services may have also hindered patients

from reentering society (Ishihara, 1975; Plaintiff Group,

2000, pp. 130–163).

It was due to the advocacy of Otani in Period V that

the issue was brought to the forefront for policy change.

Presenting the law as a violation of patients’ human

rights because of its emphasis on isolation, he success-

fully set the agenda and led other key actors into a


concerted action. The policy was changed only after the

leprosaria were recognized as legitimate homes for some

patients and outpatient services were officially estab-

lished. The patients’ privilege to remain in leprosaria

was then justified as partial compensation for their long-

term compulsory segregation (Sato, 2002).

Thus, the major justification for retaining an isolation

policy changed first from patients’ welfare to disease

control, and then back again. After the former objective

was fulfilled (proved no longer necessary) in Period III

or IV, disease control was claimed on an ongoing basis

for its retention. Policy change is a form of social

learning, which is often a decidedly political struggle

over ideas and information in which policy advocates

and opponents strategically pursue their best advantage

within a given institutional context and political setting

(Peterson, 1997). When hidden agenda items, issues

receiving relatively low priority or never actively

pursued, are present, they can hinder the achievement

of policy (Yishai, 1993). In leprosy, the provision of

welfare as a hidden or low-status agenda served as a

constraint on effective policy innovation. As was

suggested by Herrick and Jamieson (1995), nonscientific

criteria prevailed in policy making when experts were

unable or unwilling to attempt to integrate their science

into the political process. Disease control for society,

patients’ treatment and welfare, and another important

agenda, the protection and restoration of human rights

for patients, had not been deliberately coordinated.

Policy legacies as systemic bias

Policy legacies, the results of past policy decisions,

sometimes play significant roles in determining policy

and politics in subsequent periods. Previously imple-

mented policies, the consequences of what has come

before, the motivating and constraining legacies created

by previous policy debates, action, and implementation,

can all lock in future policy choices by solidifying social

and economic networks that threaten the political

viability of particular options that might have been

sustainable in an earlier policy environment (Pierson,

1992). In the case of leprosy control in Japan, pre-war

policy, which was made by the people and institutions at

that time, shaped institutions, assigned responsibilities

to specific organizations and established the rules

governing their procedures for the subsequent periods.

These policy legacies contributed to the generation and

maintenance of systemic bias, which helped hinder

policy innovation in the later period.

First, existing policy prevented the issue from attract-

ing the attention of legislators. As in the US, manage-

ment of the leprosy problem was considered a highly

technical issue, and professionals in other fields did not

get involved to any great degree (Frantz, 1992).

Consequently, leprosy never attained a salient agenda

status. Policy community around the issue, as was

conceptualized by Jordan and Richardson (1987) or

Heclo (1978), became fairly well demarcated, autono-

mous, and stable for a long time. In other words, a

subsystem or subgovernment was formed around the

issue: a small and fixed circle of actors participated in

the discussion and retained leverage in policy making

(Eyestone & Wamsley, 1984).

Among bureaucratic officials, neglect under the

existing Law was fortified by the division of labor in

the MHW. In the Ministry, the Section for Tuberculosis

and Infectious Diseases handled the overall leprosy

policy, including the design of overall management and

coordination. If the Law was to be examined by the

government, or if the transition of leprosy policy to

outpatient-based services was to be considered, this

Section had the primary competence. However, for

those in the Section, leprosy prevention was no longer a

pressing issue, as it was to politicians. On the other

hand, the management of leprosaria continued to be an

important task for the Section for National Hospitals

and Sanatoria which retained jurisdiction over leprosar-

ium administration. Its task, however, was to maintain

and improve them, not to evaluate the appropriateness

of the Law or consider abolishing leprosaria (Plaintiff

Group, 2000, pp. 27–49). For both Sections, human

rights and dignity were not the primary concerns.

Limitations imposed on the patients institutionalized

in leprosaria were, in their eyes, almost negated by the

loose administration of the Law. Officials were eager to

secure necessary budgets for the maintenance and

improvement of leprosaria, but did not call in medical

experts to shut them down.

As for the medical experts, a bias may have existed in

their opinions. From its inception, the principal part of

the JLA was populated by leprologists working in

leprosaria. These leprologists, who were certainly most

knowledgeable on leprosy in Japan, were motivated to

provide medical care, prevent disease spread and promote

research. Since many of them became the directors of

leprosaria and served as council members for the JLA,

these experts tended to consider that their leprosaria

could, and therefore should play a central and substantial

role in leprosy control (Hayashi, 1979, pp. 150–168;

Narita, 1996, pp. 29–38). This tendency did not diminish,

but rather intensified in the post-WWII period. Many

experts, at least until the mid-1950s, were unwilling to

accept the validity of international recommendations to

re-focus leprosy policy toward outpatient services. Few

medical people outside the leprosaria became interested

in leprosy since nationwide only a small number of

patients were newly reported each year and most of the

existing patients were already hospitalized.

These past policies also influenced patients. A

valuable opportunity for policy change had been lost

in Period III when patients were still young and not so


dependent on their sanatoria. Thereafter, patients should

have weighed the benefits of changing policy against the

risks of losing leprosaria (Suzuki, 1980). Most leprosy

patients in segregation had already lost contact with the

general population and even with their families. The

standard of living that the hospital environment offered

surpassed what many patients could look forward to on

the outside. Patients recognized that protecting their lives

at the leprosaria were their vested interest, warranted at

least in part by the Leprosy Prevention Law requiring

forced isolation (FNLP News, April 15, 1964). The

continuation of leprosaria as their living places and

rehabilitation facilities was not readily achieved under the

existing Law nor by subsequent alternatives. Fear of

losing their home places intimidated patients in their

movements against the law. This patients’ dilemma was

seen also in the US. When the patients who were

bacteriologically negative and physically able-bodied

were asked to leave the leprosarium in the mid-1950s,

the Patients’ Federation at Carville firmly objected to

forced discharge (Gussow, 1989, pp. 176–179). Lack of

outpatients’ services may have also hindered patients

from reentering society (Ishihara, 1975; Plaintiff Group,

2000, pp. 130–163).

Finally policies symbolically affected the mobilization

of the general public. Law is an embodiment of

authoritative statements made by the government. It

consequently exercises norm setting power over a

society, though the government sometimes reflects the

norms and values in the society (Volinn, 1989). Social

stigma, as generated and maintained by law, might

function as another bias both among patients and in

society. In the early periods, the government instilled the

threat of contagion into the public, driving the patients

into leprosaria. People came to fear the disease, while

the patients perceived themselves to be dreaded (Valen-

cia, 1989). A policy of isolation and confinement

reinforced the fear of leprosy and its stigma. The success

of institutionalizing patients depended on the initiative

of local health officials in sending patients to the

leprosarium and on the willingness of patients them-

selves to enter and then to remain at the institution.

Social stigma affected both sides, those sending the

patients and those escaping from the society. It also

constituted the policy environment in which the social

benefits from patients’ isolation were weighed against its

costs, including patients’ distress from the limitation of

civil liberties. Official rules and regulations, even when

they were not visibly enforced, contributed to the

perpetuation of lepraphobia in the post-war period.

Conclusion

Many countries that once gave special emphasis

to the isolation of leprosy patients experienced serious

difficulties in reintegrating the patients into the

community (Feenstra, 1993). Japan is no exception.

Policies adopted in the early periods, i.e., the segrega-

tion of leprosy patients, were largely maintained

after WWII. The results of these policies hindered

policy innovation in the subsequent periods. Patients’

isolation remained an official policy long after it was

proven to be scientifically unnecessary. In a sense, a

practical consideration, namely the preservation of

leprosaria as patients’ homes, was given precedence

over and preempted a fundamental policy change, i.e.,

the policy option of transforming inpatient to out-

patient. Prolonged incarceration increased patients’

dependency on their institutions, fostered social stigma

on the disease, and made it even harder to repeal the

policy.

Inhibition of timely policy change, as was observed in

leprosy control, has the potential to occur in other issues

in any countries in the future. In many policies, defining

the issue in terms of public health is fundamentally a

value question between individual rights and public

health. How issues are constructed, and how policy

interacts with science, both affect and reflect the way

how social conditions are handled (Miller, 1999; Sato,

1999). Incongruities between policy and science may

inflict unjust adversity on patients and increase the

future social cost of redress. To avoid this pitfall,

existing policy should be repeatedly reviewed and

adjusted in light of the latest scientific advances. It is,

as this study illustrates, especially important to pay

careful attention to the possibility that policy legacies

can affect policy viability in the subsequent period.

Policy should be carefully designed, continuously rede-

signed, and deliberately terminated, considering how it

fulfils its purposes, both manifest and hidden, in

changing scientific and social environments, and how it

interacts with them (DeLeon, 1987). Scientists and

policy makers must be expected to present a clear

picture of future policy consequences to the public and

identify the opportunities and obstacles to policy

change.

Acknowledgements

The authors greatly appreciate the cooperation

provided by the officials and ex-officials of the Ministry

of Health and Welfare, especially Dr. Fujio Otani.

Research assistance by Countway Library of Medicine

(Boston), Harvard Law Library (Cambridge), Takamat-

su Memorial Museum of Hansen’s Disease (Tokyo), and

Tokyo University Medical Library is also acknowl-

edged. This study is partly supported by Health Sciences

Research Grant (the Ministry of Health, Welfare and

Labour, Japan).


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