保健医療科学

2024

Vol.73 No.1 p.2 − 15

Topics: Recent topics in public health in Japan 2024

＜ Review ＞
A history of Japanese patients: What has been done to themand what have they been doing?
TAKEMURA Shinji
Department of Public Health Policy, National Institute of Public Health
Abstract
Although Japanese patients have suffered various hardships and miseries, they have fought to improvetheir conditions and won the rights that they rightfully deserve. This paper aims to provide an overview ofthe history of what has been done for and by patients in Japan.
During a cholera pandemic in the latter half of the 19th century, patients with cholera were quarantinedin facilities for evacuating people from disease (“Hibyoin”) and left untreated. With industrialization, tuberculosis became prevalent among the poor, especially among female factory workers around the 1900s;
however, adequate treatment was lacking due to a shortage of sanatoria. Sexually transmitted diseases(STDs) were defined as “Karyu-byo,” which are diseases transmitted by geishas and prostitutes. Women
have endured two tragedies: one as prostitutes and the other as wives, as a result of Karyu-byo spreading
across society through prostitutes to men, and from those men to their wives. From the beginning of the20th century, patients with leprosy wandering around towns and rural villages were admitted to leprosaria.
This treatment was later extended to include all patients, and subsequently, a national policy was enacted
to admit all patients with leprosy to leprosaria and to completely isolate them for life. Patients in leprosaria
were subjected to imprisonment, reduced diet, confinement, reprimands, and other punishments, wereforced to perform “work by the patient,” such as cleaning, laundry, and nursing care for patients with severe
conditions, and were occasionally subjected to vasectomy. The early 1900s saw many patients with mental
disorders being detained in private homes, which encouraged the establishment of psychiatric hospitals. In
psychiatric hospitals, many instruments (handcuffs, shackles, chains, etc.) were used for patients who wereout of control. Subsequently, custody in private homes was prohibited, and a system of involuntary hospitalization was established, whereby an individual with mental disorders who presents a risk of harming him/
herself or others may be hospitalized in a psychiatric hospital.
In addition to patients with the diseases described above, those with pollution-related diseases, occupational diseases, iatrogenic diseases, rare and intractable diseases, acquired immunodeficiency syndrome(AIDS), and COVID-19 were also subjected to discrimination. In addition, there was a system called “patientsfor medical use,” in which poor patients were utilized for research and education.
After World War II, patients began to actively appeal to society to address their demands and issues, andthis trend developed into the patients’ advocacy movement, which is said to be unique in the world. Patientassociations were initially organized by patients in sanatoria and leprosaria. Since the 1950s, patient associations have been established for various diseases, including rare and intractable diseases, pollution-relateddiseases, etc. In the 1970s, various patient associations that had been established for each disease began toalign with one another, and finally, the Japan Patients Association (JPA) was established in May 2005, as a
unified body of patient associations.
Corresponding author: TAKEMURA Shinji
2-3-6 Minami, Wako, Saitama 351-0197, Japan.
Tel: 048-458-6166
Fax: 048-469-2768
E-mail: takemura.s.aa@niph.go.jp

2

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A history of Japanese patients
The protection of the human rights of patients and the assurance of their livelihood and medical care arenow explicitly stated in legislation. However, it has not yet been possible to elucidate the causes of the disease and to establish treatment methods that are specifically required by patients with rare and intractablediseases. To promote research and development, patients should be aggressively involved from the perspective of patient and public involvement (PPI).
keywords: patient association, discrimination, leprosy, rare and intractable diseases, patient and public involvement (PPI)(accepted for publication, November 15, 2023)

I. Introduction
According to Parsons [1], a sick person has two responsibilities: to make an effort to get well and to seek medical
advice, as well as to cooperate with medical experts, andthese “sick roles” are institutionalized in the modern social
system. Therefore, in most countries, people visit a medical
institution when they become sick, are diagnosed with adisease by a physician, and are then treated as patients bya physician. However, this system has not necessarily been
followed universally. In the not-too-distant past in Japan, patients were assigned various duties and responsibilities, andwere put through severe hardships and miseries besides
being diagnosed and treated. In addition, patients have been
subjected to severe discrimination and exclusion basedon the nature of their illness. The reality of discrimination
against patients and their exclusion from society cannot
be observed without considering the patientʼs perspective.
Therefore, it is important to clarify the reality and historicaltransitions of discrimination against patients [2].
However, not only did the patients have to endure theseafflictions, they also fought to improve their own situations
and won the rights they rightfully deserved. Furthermore,in recent years, various patient-oriented activities havebeen implemented to reform the healthcare and social systems in Japan.
This issue has not been adequately discussed in the literature, because it involves a history of suffering and distressfor patients who were hidden behind the progress of medicine and society. This paper aims to provide an overview
of the history of what has been done for and by patients inJapan. When describing the history of patients, focusing on
diseases that have caused significant social problems during
each period is important [2]. Accordingly, the discussion inthis paper focuses on diseases that have had a significant
impact on the lives and behaviors of patients.

II. Patients who were given anything otherthan treatment
1．Patients with cholera to be quarantined and left

untreated
The first cholera outbreak occurred in Japan in 1822,
during the Edo period, which was followed by a countrywide epidemic in 1858 [3-5]. At that time, cholera wascalled “korori,” which meant “quick death” in Japanese, because patients infected with cholera died within one or twodays [2].
After the Meiji Restoration, a cholera epidemic brokeout again in 1877 [4-6], and in the same year, the first notification on cholera control (“cholera byo yobo kokoroe,” inJapanese) was issued in Japan [2,4-8]. Finally, in 1879, theRegulations for the Prevention of Cholera were enacted,
followed by the Regulations for the Prevention of Infectious
Diseases in 1880, which provided comprehensive infectious
disease control covering six infectious diseases, including
cholera [4-9]. These regulations provided for the notification of the disease, establishment of facilities for evacuating
people afflicted with the disease (“Hibyoin” in Japanese),
isolation of patients, labeling of houses where residents had
been infected, restriction of traffic to such houses, etc. [7,8].
In accordance with these regulations, “Hibyoins” were
established throughout Japan; however, the “Hibyoin” wasnot the “Byoin,” which meant hospital in Japanese [2,3].
Patients with cholera who were admitted to the “Hibyoin“
were only isolated and not adequately treated, as the Hibyoins were not adequately equipped or staffed [2-6,8,10].
Consequently, many patients died in the “Hibyoin,” which
led to “Hibyoin” being ridiculed as “Shibyoin,” which meanta “hospital to die” in Japanese [2,11].
Because cholera control measures were under the jurisdiction of the police at that time, the isolation of patients,
labeling of houses where the disease had struck, restrictionof traffic to such houses, and other measures were firmly
enforced [2-6,8]. As a result, people feared disclosing thedisease and tended to hide its occurrence as much as possible [2,4-6,8,12]. The result was tension between the people
and the police or the local authorities over cholera patients
being hidden [2]. Eventually, between 1877 and 1890, riots
and disturbances against patient isolation and other cholera
control measures erupted across the nation, which is now
known as the “cholera uprising” [3,5,6,9].

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TAKEMURA Shinji
Subsequently, the labeling of houses with cholera patientswas abolished in 1882 to prevent the hiding of patients [4,9],
and institutional standards for Hibyoins were set in 1895,
and facilities and staffing were improved [5]. The Regulations for the Prevention of Infectious Diseases were thenrepealed, and a new Act on the Prevention of Infectious
Diseases was enacted in 1897, which was a compilation of
infectious disease control measures that had been adopted
up to that time [4,5,7,8]. This Act lasted for approximately
100 years until it was abolished in 1998.
2．Patients with tuberculosis to be initially treateddifferently according to disease conditions, socio-economic status and occupation, and then uniformly
managed
Tuberculosis became prevalent around 1870 [8], and thefirst private sanatorium was established in Japan in 1889
[2,8]. Although the number of private sanatoria continued
to increase [2,7,8], only the wealthy had access to them dueto their high cost [2,8,13]. As a result, tuberculosis came tobe associated with the upper and wealthy classes [2,13].
As industrialization progressed in Japan from around
1900, factory workers, who were mainly female and young,were forced to work long hours under harsh working conditions and poor working environments, which gradually
led to ill health and a sharp increase in the number of people affected by tuberculosis [7,8,13]. In particular, female
factory workers were forced to work in extremely poor
conditions. Female workers brought to the factory fromrural villages were first placed in dormitories attached to
the factory, where the living and eating conditions were theworst [2,6]. Once a female worker contracted tuberculosis,
she was fired and sent back to her village without treatment[2,3,6,8,13]. Moreover, as such workers were too poor tobe admitted to a sanatorium, they had no choice but torecuperate at home [2,13]. Finally, they became infectious
agents of tuberculosis, which spread to their families andcommunities [2,3,6,8,13].
From this time forward, tuberculosis became a social
problem, as it was no longer a disease of the wealthy [2]. In
1904, Japanʼs first law on tuberculosis control was enacted;
in 1914, a law to promote the establishment of sanatoria
was enacted; and in 1919, the Tuberculosis Prevention Act
was enacted with the aim of promoting comprehensive
tuberculosis control [7,8,13]. This Act provided for theestablishment of sanatoria by local authorities, and for the
mandatory admission of patients who were likely to transmit tuberculosis and who were unable to pay for medical
treatment [7,8]. The Tuberculosis Prevention Act, which
was partially amended in 1937, stipulated that every patientwith tuberculosis who might transmit the disease should be4

admitted to a sanatorium, regardless of their economic status [7,8]. Furthermore, as the number of military personnel
affected by tuberculosis increased, tuberculosis sanatoria
for disabled veterans were established in 1937 [8,9,13]. In
the days before World War II, the military focused on measures to control tuberculosis as important to ensure thesecurity of soldiers, in contrast to the actions taken withrespect to female workers who contracted tuberculosis [2,6].
In 1947, after World War II, the Regulations for the Notification of Infectious Diseases were enacted in accordancewith the instructions of the General Headquarters (GHQ),
which stipulated that all patients with tuberculosis should
be reported within 24 hours of being examined by a doctor[7,8,13,14]. Previously limited to patients with tuberculosis
who were at risk of transmitting the disease, this regulation
ensured that all tuberculosis patients had to be reported[7,8,14]. A new Tuberculosis Prevention Act was implemented in 1951, which stipulated that, based on the reportof infection by a medical doctor, the public health centermust prepare a registration form based on which a publichealth nurse would make a home visit [8,14]. Since 1961,
a management system for patients with tuberculosis has
been implemented throughout the country. This system hasenabled public health centers to monitor the medical conditions, treatment status, and living conditions of all patientswith and recovering from tuberculosis, and to instruct patients based on this information to ensure that they continue treatment and are cured [8,14].
3．Patients with Karyu-byo to be managed in association with specific occupations and gender
Syphilis, which is one of the main sexually transmitted
diseases (STDs), was introduced in Japan around the beginning of the 16th century. No prejudice or discrimination
against patients with syphilis existed, as its etiology andtreatment were clear, and anyone could be infected [15].
However, by the Meiji era of the 19th century, STDs were
officially defined as “Karyu-byo,” which is a disease transmitted in the “Karyu-kai,” that is, the society of geishas andprostitutes, and therefore, the measures taken against the
Karyu-byo centered on prostitutes [2]. As the first measure
to control STDs in Japan, the examination of prostitutes
was initiated in several districts in 1867 [6,8] and expanded
nationwide in 1876 [2,3,8]. The system of licensed prostitution was established in 1900, and examinations of STDs
for licensed and unlicensed prostitutes were also institutionalized [7,8]. In 1927, the Karyu-byo Prevention Act waspromulgated, which stipulated that, in addition to licensed
and unlicensed prostitutes, barmaids and geisha should also
be covered [7,8].
From the Meiji era until World War II, measures against

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A history of Japanese patients
STDs were established solely at the expense of prostitutes[2]. Prostitutes who were enslaved due to poverty were
subjected to the double burden of debt and STDs [2]. Prostitutes in brothels were forced to undergo medical examinations, and those who contracted STDs were compulsorily
hospitalized and quarantined [2,6]. However, brothel owners attempted to prevent the detection of Karyu-byo during
medical examinations, to avoid absences of prostitutes fromwork [2]. This practice damaged the health of the prostitutes and led to the spread of Karyu-byo. Karyu-byo spreadthroughout society by infecting men, and from those mento their wives. Wives who were infected with Karyu-byo
by their husbands were often forced to divorce [2,6]. Thus,
women had to endure two tragedies regarding Karyu-byo̶
one as prostitutes and the other as wives [2].
In November 1945, after World War II, a special provisionof the Karyu-byo Prevention Act was enacted and promulgated in accordance with the instructions of the GHQ,
which resulted in a strict crackdown. Medical personnel
were obliged to report patients with Karyu-byo in the samemanner as other infectious diseases, and prostitutes wereforced to take medical examinations and possess a certificate proving that they did not have Karyu-byo [7,8,14].
However, since the system of licensed prostitution was
abolished in 1946 in accordance with the instructions of the
GHQ [7,8,14], conducting regular medical examinations forprostitutes has become a challenge [8,14]. Therefore, STDs
were redefined as infectious diseases affecting the entire
population, rather than simply as Karyu-byo focused on
prostitutes [8]. In 1948, the Karyu-byo Prevention Act was
repealed, and at the same time, the Act on the Prevention of
Sexually Transmitted Diseases was enacted [7-9,14]. Later,in 1999, this Act was merged into the Act on the Preventionof Infectious Diseases and Medical Care for Patients with
Infectious Diseases.
4．Patients with leprosy to be completely isolated
from society for life
The existence of leprosy in Japan was described in the
Chronicles of Japan, which was compiled in the 8th century,and the legislation of the same period stipulated how to deal
with people affected by leprosy [16,17]. With the introduction and dissemination of Buddhism, leprosy became regarded as a punishment for karma committed in a previous life
[15-18]. Furthermore, because leprosy was often transmitted within families, it came to be regarded as a disease thatwas transmitted from parents to children through lineageor bloodlines, and finally as a genetic disease [2,16,19-24].
These perceptions regarding leprosy led to discrimination
against, and the abhorrence of persons with leprosy for along time [2,8,15-21]. Many patients with leprosy wanderedaround towns and rural villages, sometimes living in theirown colonies around shrines and temples [2,8,15,16,21,2528]. Despite this situation, no measures were taken by thegovernment [2,15], and the private sector was exclusively
involved [2,7,8,21,25].
Leprosy did not become a major social problem until the
Meiji era [2,8,11,20]. However, this was more of an issue
of foreign affairs than public health [2]. In other words, patients with leprosy wandering around were considered anembarrassment when foreigners visited Japan [2,16,21,26].
In 1907, Act No. 11 was issued as the first legislation
concerning measures to control leprosy in Japan [2,79,16,17,21,26,29,30]. The Act aimed at measures against
patients with leprosy who were wandering [7,8,17,21,30,31],
and stipulated the obligation of medical doctors to notify
patients, the compulsory admission of patients who wereresourceless and wandering, and the establishment of public leprosaria [2,8,21,30]. Although private leprosaria had
been established before that time [7,8,16,29], five publicleprosaria were established in 1909, after the Act came into
force [2,7,8,16,21,25-27,29-31]. However, accommodating
patients wandering around was not enough to eliminate
leprosy [8,21]; therefore, Act No.11 was substantiallyamended, and the Leprosy Prevention Law was enacted in1931 [7,8,17,21,25,26,29,31]. This law allowed all patients,
whether they could be cared for at home or not, to be hospitalized without any financial burden being levied on theirfamilies [7,8,21,25,29,31]. A national policy was initiated toadmit all patients with leprosy to leprosaria, exclude themfrom the community, and completely isolate them for life
[17,21,26,29,31].
People with leprosy who were admitted to leprosaria
were forced to live a life of hardship. When Act No. 11 firstcame into force, the treatment of patients with leprosaria
was not always satisfactory, and there were many who
disturbed the order in the leprosaria or ran away from theleprosaria [2,7,8,21]. To respond to these patients, the director of the leprosarium was given the right to conductdisciplinary inspections in 1916 [2,7,8,17,21,26,29-31], andpunishments such as imprisonment, reduced diet, confinement, and reprimands were carried out under the authorityof the director [26,29-31], without any judicial or otherproper procedures [17,20,21]. Furthermore, to confine andcorrect patients who were particularly insubordinate at theleprosarium, a heavy confinement cell referred to as a “special ward” was established in 1938 at Kuriu-Rakusenen in
Kusatsu, Gunma Prefecture, where eligible patients weregathered from throughout the country [2,6,17,26,29-31].
Before World War II, the leprosaria had inadequate budgets, and inmates were forced to live extremely poorly interms of food, clothing, and housing [2,17,30]. This led to

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5

TAKEMURA Shinji“work by the patient” to supplement daily living in the leprosarium. It is said that “work by the patient” began when
patients became self-sufficient in providing their own foodat the “Hukusei Hospital,” a private leprosarium establishedin 1889 [30,31]. Afterwards, “work by the patient” was subsequently introduced in public leprosaria [17,30,31]. The
specific tasks of patient work were diverse and included
cooking, laundry, sewing, gauze and bandage recycling,cleaning, waste disposal, housekeeping, construction work,
farm work, cremation and burial of patient bodies, patienttransportation, and nursing care for patients with severe
conditions [17,26,30-33]. The most unreasonable of thesetasks was nursing care for patients with severe conditions
by those with mild conditions, which should have been
performed by licensed nurses [2,30,33]. This was carriedout based on the concept of “mutual aid and mutual love”
imposed by the leprosarium, which said that “you should
serve others when you are well, because your condition will
eventually worsen and you will become disabled, and you
will need to be taken care of by others” [2,17,30,33].
Vasectomy has been performed on male patients to prevent pregnancy and childbirth in public leprosaria [2,17,20].
In 1915, the first vasectomy on a male patient with leprosy
was performed at Zensei Hospital, a public leprosarium inTokyo [2,26,29,31]. Marriage in the leprosarium was permitted by accepting a vasectomy [17,21,29]. In some cases,
male patients were forced to undergo vasectomy without
consent, and female patients who became pregnant wereinvoluntarily subjected to abortions [26]. The Eugenic Protection Act of 1948 legitimized sterilization and abortion forpatients with leprosy and their spouses [21,26,29,31].
In 1953, the Leprosy Prevention Law was amended[8,9,31]. The main revisions were as follows: (1) patients
who were likely to be infectious were to be admitted to theleprosaria, but were first to be convinced by recommendation; (2) patients were not to leave the leprosarium without
permission; and (3) the director of the leprosarium could
impose a warning or confinement on patients to maintainorder in the leprosarium [7,8,14]. However, the Law stipulated no rules regarding discharge, and the policy of complete isolation remained unchanged [21,26,31,33]. In 1956,
although it was not specified in the Law, the Ministry of
Health and Welfare notified provisional criteria for patientdischarge [21,31-33], and the number of patients discharged
from the leprosarium after their condition became less severe increased [7,8,14,21,32,33]. Finally, in 1996, the “Actto Abolish the Leprosy Prevention Law,” drafted by the
Ministry of Health and Welfare, was passed [21,27,28,31].
In this Act, it was stipulated that the necessary medical
treatment should be provided to those who were admitted
to a leprosarium and who would continue to be admitted to6

the leprosarium, that patients could leave the leprosariumor remain there as long as they wished, and that those who
decided to return to the leprosarium after discharge could
be readmitted [27,28,33].
5．Patients with mental disorders to be in custody inprivate homes or hospitals
There were descriptions of insanity in legislation in the
8th century, which stipulated that patients with mental disorders were not obliged to pay taxes or serve the military,and that their penalties would be reduced if they committeda crime [15]. However, there was no evidence of persecution or compulsory isolation for patients [15,34]. Treatment
for insanity began around the 14th century [35], and a number of shrines, temples, and private institutions provided
care for patients with mental disorders during the Edo Era[36]. By contrast, people with mental disorders were often
confined in private homes in the Edo Era [3,34,35], and it
continued into the Meiji era [2,7,8].
In 1883, the Soma Affair occurred [34-37]. This case involved a lawsuit filed by a clansman from the former Soma
Domain regarding the unfair confinement of a feudal lordof the Soma Domain who had developed a mental disorder[2,8,34-36]. This led to the issuance and enforcement of
the Act on the Custody of Patients with Mental Disorders
in 1900 [2,3,7-9,34-37]. The Act stipulated that: (i) patientswith mental disorders must be assigned a person who is
responsible for their custody; (ii) no one other than the person responsible for their custody may take custody; (iii) the
person responsible for their custody is obliged to carry out
the custody; and, (iv) permission from a government agency is required for the implementation of custody [2,7,8,35].
The Act was intended to protect patients with mental disorders from unreasonable violations of their human rights[8,35]. However, it lacked sufficient provisions for the careand treatment of these patients [2,8,35], and placed a heavy
burden on their families and relatives, who were often responsible for custody of the patients [38]. In 1918, Shuzo
Kure, et al. published “The Actual Situation of Custody of
Persons with Mental Disorders in Private Houses” [2,3436], which revealed that the number of persons confinedin private homes had increased since the Act was enacted,that they were often confined in unsanitary conditions, andthat medical care was rarely provided to the confined persons [34,35]. Furthermore, they called for the abolition ofcustody in private homes and the development of psychiatric hospitals [34,35].
The first public psychiatric hospital in Japan was established in Kyoto in 1871 [2,7,8,34,36], followed by a secondin Tokyo in 1877 [2,8,9,34-36]. In 1919, the Psychiatric
Hospital Act was enacted [3,7-9,34-37], which stipulated

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A history of Japanese patients
national government subsidies for the establishment ofprefectural psychiatric hospitals [7-9,35,37]. However, thenumber of psychiatric hospitals did not increase sufficiently [8,34,35,37]. Since the psychiatric hospitals of the time
were primarily intended to provide custody rather than
medical care [2,3,7,38,39], many instruments (handcuffs,
shackles, chains, etc.) and methods of restraint were used
for patients who were out of control [2,3], and cells were set
up inside psychiatric hospitals to confine patients who were
extremely violent [2]. In addition, nurses assaulted patientsand stole patientsʼ property, among other abuses [35]. Kure
worked to gain respect for the human rights of patients withmental disorders and to improve their treatment, by prohibiting such restraints and the abuse of patients, and restricting the use of cells [2,3,34,35].
In 1950, the Act on the Custody of Patients with Mental
Disorders and the Psychiatric Hospital Act were repealed,
and the Mental Hygiene Act was enacted [7-9,14,34-37] toensure respect for the human rights of patients with mental disorders and to improve their medical care [7,8]. The
Act required prefectures to establish psychiatric hospitals,
prohibit custody in private homes, and establish a system
of involuntary hospitalization [8,35,37]. In a system of involuntary hospitalization, the prefectural governor may
hospitalize a person with a mental disorder who is at riskof harming him/herself or others due to their disorder ina psychiatric hospital [8,35,37]. In 1964, the “Reischauer
Affair” occurred, in which a boy who was thought to be
schizophrenic injured the Ambassador of the United States
to Japan [8,9,34,35,37,38]. Afterwards, in 1965, the Mental
Hygiene Act was amended to strengthen the authority ofprefectural governors with respect to involuntary hospitalization [8,14,34,35,37].
In 1984, two inpatients died due to violence inflicted bynursing staff at a psychiatric hospital in Utsunomiya, Tochigi [8,37,40], which led to the amendment of the Mental
Hygiene Act in 1987 and its renaming to the Mental Health
Act [8,9,37], and measures to strengthen the protectionof patientsʼ rights were implemented [8,37]. Although the
Mental Health Act was replaced with the Act on Mental
Health and Welfare for Persons with Mental Disorders or
Disabilities in 1995, incidents of misconduct have occurredin psychiatric hospitals, such as injury resulting in death by
a nursing assistant, deaths of patients due to inappropriate
physical restraints, and isolation and restraint of patients
without a diagnosis by a physician, among others [37].
6．Patients with various diseases to be discriminatedagainst for various reasonsPatients were subjected to discrimination, and the mostcommon diseases subjected to discrimination before WorldWar II were acute infectious diseases including cholera, tuberculosis, leprosy, and mental disorders [2]. Discrimination
against patients with leprosy was particularly extreme [2],and they have long been subjected to both discrimination
and abhorrence [2,8,15-21].
In addition to the above, patients with pollution-related diseases, occupational diseases, iatrogenic diseases,
and rare and intractable diseases were also subjected todiscrimination [2]. These diseases were often subject tosevere discrimination and prejudice, because their causes
and pathologies were not identified at the outset of theiroccurrence and were therefore regarded as “weird diseases” [2]. Regarding pollution-related diseases, discrimination
against patients with Minamata disease [41,42] and Yusho(oil disease) [42,43] has been mentioned. In the early stagesof the Minamata disease outbreaks, the disease was mistakenly perceived as a genetic disease, which may have led
to discrimination [41]. Subacute myelo-optico-neuropathy(SMON) was suspected of being an infectious disease when
it first occurred, resulting in discrimination against patientswith SMON [44-49], many of whom committed suicide due
to discrimination [45-49]. Discrimination against AIDS wascomplicated. Firstly, the large number of AIDS patientsamong men who have sex with men (MSM) had led to discrimination against MSM and against patients with AIDS[50]. Secondly, discrimination against patients with hemophilia also occurred because many patients with hemophilia
who used blood products contaminated with HIV became
infected with HIV [49,50]. Recently, discrimination against
COVID-19 has remained fresh in our memory [51].
7．Patients to be forced to participate in medical research and medical education
Although involving patients is essential for the progressof medicine, a system called “patients for medical use” existed in which poor patients were utilized for research andeducation [2,52]. This system was introduced in 1877 at the
University of Tokyo Hospital and subsequently spread to
medical schools throughout Japan [52]. Under this system,
patients were hospitalized only if they were poor and academically needed and were utilized for academic purposes[52]. While their human rights were not always well-preserved, in accordance with the Declaration of Helsinki adopted in 1964, measures were taken to protect the humanrights and safety of patients and subjects participating inresearch and education, including informed consent [52].
Although slightly different from the system describedabove, patients who agreed to participate in research toelucidate the causes of diseases and establish treatment
methods were also compensated monetarily. In FY1971, a
program was introduced to pay 10,000 yen per month as

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TAKEMURA Shinji
a reward for research participation among inpatients with
SMON [8,46]. This program has been extended to otherrare and intractable diseases and modified to compensate
for out-of-pocket medical expenses [8,46,52]. Since 2014,
subsidies have been provided purely to compensate for the
medical costs of patients with rare and intractable diseases,
rather than in the context of research participation [52].

III. Patients who act on their own initiative
As described above, patients have been subjected toisolation, custody, compulsory hospitalization, involuntary
work, and discrimination, not only to be treated but sometimes even not to be treated at all. They have also been
subjected to unreasonable treatment and violations of their
human rights, not as objects of treatment, but as objectsof control. Furthermore, they have encountered great difficulties when making any kind of claim to such treatment[2]. After World War II, however, patients began to actively
appeal to society, the government, and corporations to address their demands and concerns [2]. This developed into
the patientsʼ advocacy movement of Japan, which is said tobe unique in the world [53,54].
Although there were incidents in the 19th century inwhich patients rose up en masse, such as the “cholera
uprising” [3,5,6,9], patient associations organized by thepatients themselves and the patientsʼ advocacy movements
which arose through their activities are said to have begun
in sanatoria and leprosaria [2,53,54].
1．Patients with tuberculosis and leprosy to struggle
for their rights to life
Although there was a shortage of medical supplies andfood in the sanatoria after World War II, in many cases,
sanatoria managers and staff sold them illegally [53,55]. Patients began to ask for the release of concealed supplies, theexpulsion of particularly abusive staff, and the democratization of the sanatoria [53,55]. By the end of 1945, patientsbegan to form autonomous associations at each sanatorium[54,55]. In 1946, a federation of autonomous associations ofseveral sanatoria in Tokyo was formed, which expanded toa federation of all prefectures by 1947 [53-55]. In the same
year, a federation of autonomous associations of sanatoria
for disabled veterans was formed [53-55]. In 1948, these
two federations merged to form the first nationwide patientassociation in Japan, called the “Nihon Kanja Domei” in1949 [53-55]. By virtue of the activities of the Nihon Kanja
Domei, more than 10 new drugs for tuberculosis, including
streptomycin, have been covered under medical insurance[53,55]. Another activity was resistance to a substantial
reduction in the social security budget in FY1954 [7,53,55].

8

Although the reductions could not be withdrawn, the movement did result in strengthened measures to control tuberculosis [53,55].
In August 1957, Shigeru Asahi, a member of the Nihon
Kanja Domei, filed an administrative lawsuit against the national government, claiming that the amount of public assistance benefits for patients in the sanatoria was too low andthat it violated Article 25 of the Constitution of Japan, which
stipulated that all people should have the right to maintainthe minimum standards of wholesome and cultured living[53-55]. This lawsuit became known as the “Asahi Lawsuit,” and the Nihon Kanja Domei continued to fully support
Asahi [53-55]. Asahi won in the first instance [9,53,55], but
lost in the second [53,55]. As a result, he appealed to theSupreme Court, which rejected his appeal in 1967, after
his death in 1964 [9,53,55]. Although the Asahi lawsuit has
been concluded, it has contributed to the improvement ofJapanʼs social security system, including an increase in public assistance benefits [54,55].
Shortly after the establishment of public leprosaria in
1909, patients with leprosy began demonstrating and rioting
to receive better treatment [2,29,30,54]. In 1926, the firstautonomous association of patients with leprosy in Japanwas established at a leprosarium in Kyushu [30,53,54], followed by the establishment of autonomous associations atother leprosarium sites [2,6,17,29,30,53,54]. After WorldWar II, Promin was introduced to Japan as a new drug fortreating leprosy [27,31]. In 1948, patients campaigned fora budget to be secured to obtain Promin [7,9,14,17,2628,30,31], as new drugs were difficult to obtain either byimport or domestic production [26,27,30]. Consequently,
the budget was approved, and Promin treatment was initiated [27,28,30]. The movement to obtain Promin also served
as the impetus for a revitalization of the autonomous associations of each leprosarium [2,6,21,26,31], and partnerships
and unions were promoted among the autonomous associations [17,21,30,31]. Subsequently, a nationwide associationof patients with leprosy, called the “Zenkankyo” was established in 1951 [6,7,9,14,17,21,26,30,31,33,53,54].
In 1953, when the Leprosy Prevention Law was amended, the Zenkankyo decided to hold demonstrations, patient
work strikes, and hunger strikes to eliminate the policyof complete isolation, although this goal was not fulfilled[7,9,14,21,26,30-33,54]. Subsequently, the Zenkankyo met
the requirement for an increase in nursing staff [30,33], andcontinued to submit several requests to the national government to amend the law [17,21,27,28,56]. At a meetingwith the Zenkankyo in 1994, an external expert suggested that the Leprosy Prevention Law should be abolishedrather than amended [17,21,27,33]. In 1995, the Zenkankyo proposed conditions for the lives and care of patients

J. Natl. Inst. Public Health, 73 (1) : 2024

A history of Japanese patientsthat would be necessary to abolish the law [17,21], and in
1996, the Leprosy Prevention Law was finally abolished[21,27,28,31].
2．Patients with rare and intractable diseases, etc.
to be engaged in activities to improve their medicalcare and their lives
Since the 1950s, patient associations have been established for various diseases [53-55], and the establishmentof patient associations was concentrated during 1965–1975[55]. Patient associations were categorized into: (1) tuberculosis and leprosy; (2) rare and intractable diseases; and (3)pollution-related diseases, occupational diseases, and iatrogenic diseases [53]. Patient associations concerned with (2)require an elucidation of the causes of the disease, establishment of treatment methods, and assurance of livelihood,
while those concerned with (3) require a clarification of the
responsibility of perpetrators, such as the government andcorporations, and compensation for medical care and livelihood [53].
In the 1970s, the various patient associations that had
been established for each disease began to align with eachother [55]. Regarding rare and intractable diseases, patientassociations have been established for muscular dystrophy,
SMON, Behçetʼs disease, myasthenia, collagen disease,etc. [8,57]. In addition, in April 1972, the National Liaison
Council of Patient Associations for Rare and Intractable
Disease, known as “Zen-Nan-Ren” was established, consisting of these patient associations [8,53-55,57]. Partly due
to the efforts of Zen-Nan-Ren, the “Outline of Intractable
Disease Measures” was formulated in October 1972 topromote measures for addressing rare and intractable diseases [53,55]. Furthermore, regarding diseases other thanrare and intractable diseases, the National Liaison Councilof Patient Organizations, known as “Zen-Kan-Ren” wasestablished in November 1975, consisting of Nihon Kanja
Domei and the Zenkankyo, among others [53-55]. In addition, local liaison councils of patient associations for rare
and intractable diseases have also been established at theprefectural level [53,57,58], whereas Zen-Nan-Ren and ZenKan-Ren were national-level councils [53]. Since the first
local liaison council was established in Toyama Prefecturein March 1972 [53-55,57], such councils have been established in more than 40 prefectures [57] with the advocacy of
local governments [53,55]. In 1974, a liaison council of local
liaison councils was also established to promote interaction
among local liaison councils [53,55].
Subsequently, Zen-Nan-Ren, Zen-Kan-Ren, and the local
liaison councils engaged in communication [57], and in June
1986, Zen-Kan-Ren and the local liaison councils merged toform the Japan Patients Council (JPC) [54,55,57,58]. Finally,in May 2005, JPC and Zen-Nan-Ren joined to establish theJapan Patients Association (JPA) [54,57-59], thus forminga unified body of patient associations. The JPA defines theroles of patient associations as (1) to understand their own
disease correctly and scientifically, (2) to encourage eachother not to be defeated by the disease, and (3) to encourage society to create a better environment for medical care
[54,57-60], and is actively engaged in activities such as petitioning the Diet [54,58]. As of September 13, 2023, the JPA
comprises 100 patient associations [60].

IV. Future of Japanese patients: What will bedone to them and what should they do?
In Japan, patients were subject to control, not treatment,
because the police had overall jurisdiction over the publichealth administration [4,5,7,8]. Regarding cholera, the police took the lead in implementing measures such as quarantine [2-6,8]. Measures against Karyu-byo were also under
the jurisdiction of the police [2,6,8]. Regarding leprosy, Act
No. 11 focused on controlling public morals and ensuring
public security [2,7,8,21,29], and both the director and staffof the leprosarium were police officials at the time of its
establishment [2,21,26,29,31]. Moreover, the police had theright to permit custody of patients with mental disorders inprivate homes [7,8,36], and patients with mental disorders
could be confined for public security and social protection[2,3,14,34,35,37,38,40]. After World War II, the public healthadministration was no longer under the jurisdiction of thepolice [8], and the objects to be controlled were no longer
patients, but diseases.
Although Article 25 of the Constitution of Japan, enacted
after World War II, stipulated that all people should havethe right to maintain minimum standards of wholesome andcultured living, it was necessary for patient associations andpatientsʼ advocacy movements to enable patients to actuallyachieve their rights [2]. In addition, various lawsuits filedby patients regarding pollution-related diseases [8,9,53],
drug-induced diseases [8,9,37,53], and leprosy [31,37,56],
as well as the Asahi lawsuit [53-55] have always raised
the issue of the human rights of patients, not merely theirclaims for compensation for damages [2,53]. Furthermore,those who support patients in the advocacy of their humanrights also play an important role [2], one of which is theombudsman. The Patientsʼ Rights Ombudsman was firstestablished in Fukuoka City in 1999 [37,61,62], followed by
Tokyo in 2002 [62]. Although the Ombudsman in Fukuoka
was disbanded in 2017 [37, 62], only the Ombudsman in Tokyo continues its activities [37]. Otherwise, the Medwatcher Japan (“Yakugai Ombudsperson” in Japanese), which waslaunched in 1997 to monitor and prevent drug-induced dis-J. Natl. Inst. Public Health, 73 (1) : 2024

9

TAKEMURA Shinjieases [49,63,64], and the ombudsman for psychiatric care,which was initiated in Osaka in 2003 [65-67] continue to be
active today.
Partly through the efforts of the patients and their supporters, the protection of their human rights is now explicitly stated in legislation. For example, in the Preamble to the
Act on the Prevention of Infectious Diseases and Medical
Care for Patients with Infectious Diseases, it is stated that
“In the past in Japan, there was groundless discriminationor prejudice against patients suffering from leprosy, AIDS,
and other infectious diseases, and those suffering fromsimilar illness.” “The Japanese public must take these facts
seriously and apply them as a moral lesson for the future.”[68] The Act stipulates full respect for the human rights ofpatients with infectious diseases and other individuals [68],although the quarantine of patients continues to be one of
the measures taken against highly communicable and serious infectious diseases.
Although patient associations and patientsʼ advocacy
movements have aimed to make various claims or requests
to the government and other entities, they should now
promote actions to meet their own needs. While the livelihoods and medical care of patients are generally assured
through the improvement of laws and regulations, it is
not yet possible to elucidate the causes of the disease andestablish treatment methods that are particularly requiredby patients with rare and intractable diseases. Previously,
related research and development depended on the government, universities, and researchers. However, the patientsthemselves should be aggressively involved in researchand development. From this perspective, Patient and Public
Involvement (PPI), that is, “research being carried out ʻwithʼor ʻbyʼ members of the public rather than ʻto,ʼ ʻabout,ʼ or ʻforʼthem” [69], is currently being promoted. Although progresshas not yet been made in Japan [70], future development
is expected, as the Japan Agency for Medical Research andDevelopment (AMED), which is the funding agency for
health and medical research, has prepared the Patient andPublic Involvement (PPI) Guidebook [71], the National
Cancer Center (NCC) has engaged in a pioneering initiative[72], and the JPA conducted a research project funded by
the Health, Labour and Welfare Sciences Research Grants
under the jurisdiction of the Ministry of Health, Labour andWelfare in 2012 [54].
It should be noted that patients are affected by the societal context. The policy of absolute isolation imposed on
patients with leprosy has been influenced by modernization[23] and nationalism [21], and the treatment of patientswith mental disorders has been influenced more by social
conditions than by disease conditions [2]. Conversely, thepatientsʼ advocacy movement has been influenced by dem-

10

ocratic trends in Japan since World War II, such as workersʼ
and farmersʼ movements [53,55]. Therefore, the future ofJapanese patients should be monitored in the context of social trends.
In the past, Japanese patients were excluded from society
and never returned, because a disease could not be cured
and had to be avoided. Currently, Japanese patients are included in society because many diseases are now treatableor controllable, and because systems have been establishedthat allow people to live in society, even when their diseases cannot be completely resolved. Anyone can become apatient, and anyone can be released from the role of patient.
The patient is a reversible entity, and there is no rationale
for excluding him or her.

Conflicts of Interest
The author declares that there are no conflicts of interest
regarding the publication of this article.

References[1] Parsons T. The social system. Glencoe, USA: The Free
Press; 1951.
[2] 川上武．現代日本病人史 病人処遇の変遷．東京：勁
草書房； 1982．
Kawakami T. [Gendai nihon byonin shi: Byonin shogu nohensen.] Tokyo: Keiso Shobo; 1982. (in Japanese)[3] 立川昭二．病気の社会史 文明に探る病因．東京：日本放送出版協会； 1971．
Tatsukawa S. [Byoki no shakai shi: Bunmei ni saguru
byoin.] Tokyo: Nihon Hoso Shuppan Kyokai; 1971. (inJapanese)[4] 小林丈広．近代日本と公衆衛生 都市社会史の試み．
東京：雄山閣出版； 2001．
Kobayashi T. [Kindai nihon to koshu eisei: Toshi shakai
shi no kokoromi.] Tokyo: Yuzankaku Shuppan; 2001. (inJapanese)[5] 竹原万雄．近代日本の感染症対策と地域社会．大阪：
清文堂出版； 2020．
Takehara K. [Kindai nihon no kansensho taisaku to chiiki
shakai.] Osaka: Seibundo Shuppan; 2020. (in Japanese)[6] 小坂富美子．病人哀史 病人と人権．東京：勁草書房；
1984．
Kosaka F. [Byonin ai shi: Byonin to jinken.] Tokyo: Keiso
Shobo; 1984. (in Japanese)[7] 厚生省二十年史編集委員会，編．厚生省二十年史．
東京：厚生問題研究会； 1960．
Koseisho Nijunenshi Henshu Iinkai. [Koseisho nijunenshi.] Tokyo: Kosei Mondai Kenkyukai; 1960. (in Japanese)[8] 厚生省五十年史編集委員会，編．厚生省五十年史（記J. Natl. Inst. Public Health, 73 (1) : 2024

A history of Japanese patients
述篇）．東京：財団法人厚生問題研究会； 1988．
Koseisho Gojunenshi Henshu Iiinkai. [Koseisho gojunenshi (kijutsu hen).] Tokyo: Kosei Mondai Kenkyukai; 1988.
(in Japanese)[9] 厚生省五十年史編集委員会，編．厚生省五十年史（資料篇）．東京：財団法人厚生問題研究会； 1988．
Koseisho Gojunenshi Henshu Iinkai. [Koseisho gojunenshi (shiryo hen).] Tokyo: Kosei Mondai Kenkyukai; 1988.
(in Japanese)[10] 江藤文夫．歴史への誘惑 第 20 回明治期の伝染病対策と衛生行政 1．コレラを中心に．Journal of ClinicalRehabilitation. 2015;24(8):822-827.
Eto F. [Rekishi eno yuwaku dai 20 kai meiji ki no densenbyo taisaku to eisei gyosei 1: Chorera o chushin ni.]
Journal of Clinical Rehabilitation. 2015;24(8):822-827. (inJapanese)[11] 江藤文夫．明治 19 年の頓挫と隔離政策．作業療法
ジャーナル．2020;54(5):444-448.
Eto F. [Meiji 19 nen no tonza to kakuri seisaku.] Sagyo
Ryoho Journal. 2020;54(5):444-448. (in Japanese)[12] 阪上孝．公衆衛生の誕生．経済論叢．1995;156:211237.
Sakagami T. [Koshu eisei no tanjo.] Keizai Ronso.
1995;156:211-237. (in Japanese)[13] 福田眞人．結核の文化史 近代日本における病のイ
メージ．名古屋：名古屋大学出版会； 1995．
Fukuda M. [Kekkaku no bunka shi: Kindai nihon ni okeru
yamai no image.] Nagoya: Nagoya Daigaku Shuppankai;
1995. (in Japanese)[14] 厚生行政調査会，編．戦後厚生省二十五年史．東京：
厚生行政調査会； 1971．
Kosei Gyosei Chosakai, edited. [Sengo Koseisho niju-gonenshi.] Tokyo: Kosei Gyosei Chosakai; 1971. (in Japanese)[15] 新村拓．日本医療社会史の研究 古代中世の民衆生活と医療．東京：法政大学出版局； 1985．
Shinmura T. [Nihon iryo shakai shi no kenkyu: Kodai
chusei no minshu seikatsu to iryo.] Tokyo: Hosei Daigaku
Shuppankyoku; 1985. (in Japanese)[16] 福西征子．語り継がれた偏見と差別 歴史のなかのハ
ンセン病．京都：昭和堂； 2017．
Fukunishi Y. [Katari tsugareta henken to sabetsu: Rekishino naka no hansenbyo.] Kyoto: Showado; 2017. (in Japanese)[17] 成田稔．日本の癩 (らい) 対策から何を学ぶか 新たなハンセン病対策に向けて．東京：明石書店； 2009．
Narita M. [Nihon no rai taisaku kara nani o manabuka:
Aratana hansenbyo taisaku ni mukete.] Tokyo: Akashi
Shoten; 2009. (in Japanese)[18] 加賀谷紀子. わが国のハンセン病対策に人々はどう関わったか―皇室の慈善事業と宗教団体の視点から―．弘前学院大学看護紀要．2013;8:65-71.
Kagaya N. [How the Japanese people have dealt with taking measures against hansenʼs disease in Japan: From theperspective of the charity work of the Japanese royal family and some religious groups.] Hirosaki Gakuin Daigaku
Kango Kiyo. 2013;8:65-71. (in Japanese)[19] 成田稔．日本の癩 (らい) 対策の誤りと「名誉回復」今，改めてハンセン病対策を考える．東京：明石書店；
2017．
Narita M. [Nihon no rai taisaku no ayamari to “meiyo
kaifuku”: Ima aratamete hansenbyo taisaku o kangaeru.]
Tokyo; Akashi Shoten; 2017. (in Japanese)[20] 大谷藤郎．現代のスティグマ ハンセン病・精神病・エイズ・難病の艱難．東京：勁草書房； 1993．
Ohtani F. [Gendai no stigma: hansenbyo, seishinbyo,
AIDS, nambyo no kannan.] Tokyo: Keiso Shobo; 1993. (inJapanese)[21] 大谷藤郎．らい予防法廃止の歴史 愛は打ち克ち城壁
崩れ陥ちぬ．東京：勁草書房； 1996．
Ohtani F. [Rai yoboho haishi no rekishi: Ai wa uchikachi
joheki kuzure ochinu.] Tokyo: Keiso Shobo; 1996. (in Japanese)[22] 江藤文夫．歴史への誘惑 第 32 回結核とハンセン病．
Journal of Clinical Rehabilitation. 2016;25(8):817-820.
Eto F. [Rekishi eno yuwaku dai 32 kai kekkaku to hansenbyo.] Journal of Clinical Rehabilitation. 2016;25(8):817820. (in Japanese)[23] 江藤文夫．ハンセン病について思うこと．作業療法
ジャーナル．2020;54(4):344-348.
Eto F. [Hansenbyo ni tsuite omou koto.] Sagyo Ryoho
Journal. 2020;54(4):344-348. (in Japanese)[24] 日弁連法務研究財団．ハンセン病問題に関する検証
会議最終報告書．2005．
Nichibenren Homu Kenkyu zaidan. [Hansenbyo mondai
ni kansuru kensho kaigi saishu hokokusho.] 2005. (in Japanese) https://www.jlf.or.jp/work/hansen/report/ (accessed2023-11-11)[25] 山本俊一．増補日本らい史．東京：東京大学出版会；
1997．
Yamamoto S. [Zoho nihon rai shi.] Tokyo: Tokyo Daigaku
Shuppankai; 1997. (in Japanese)[26] 藤野豊．ハンセン病と戦後民主主義 なぜ隔離は強化されたのか．東京：岩波書店； 2006．
Fujino Y. [Hansenbyo to sengo minshu shugi: Naze kakuri
wa kyoka saretanoka.] Tokyo: Iwanami Shoten; 2006. (inJapanese)[27] Sato H, Frantz JE. Termination of the leprosy isolation
policy in the US and Japan: Science, policy changes, andthe garbage can model. BMC International Health andHuman Rights. 2005;5:3. doi:10.1186/1472-698X-5-3[28] Sato H, Narita M. Politics of leprosy segregation in Ja-

J. Natl. Inst. Public Health, 73 (1) : 2024

11

TAKEMURA Shinji
pan: the emergence, transformation and abolition of thepatient segregation policy. Social Science & Medicine.
2003;56:2529-2539.
[29] 藤野豊．日本ファシズムと医療 ハンセン病をめぐる実証的研究．東京：岩波書店； 1993．
Fujino Y. [Nihon fascism to iryo: Hansenbyo o meguru
jisshoteki kenkyu.] Tokyo: Iwanami Shoten; 1993. (in Japanese)[30] 全国ハンセン氏病患者協議会，編．全患協運動史 ハ
ンセン氏病患者のたたかいの記録．東京：一光社；
1977．
Zenkoku hansenshibyo kanja kyogikai. [Zenkankyo undo
shi: Hansenshibyo kanja no tatakai no kiroku.] Tokyo:
Ichikosha; 1977. (in Japanese)[31] 川﨑愛．ハンセン病は人に何をもたらしたのか ハン
セン病療養所の創設から現代まで．龍ケ崎：流通経済大学出版会； 2020．
Kawasaki A. [Hansenbyo wa hito ni nani o motarashita
noka: Hansenbyo ryoyojo no sosetsu kara gendai made.]
Ryugasaki: Ryutsu Keizai Daigaku Shuppankai; 2020. (inJapanese)[32] 坂田勝彦．ハンセン病者の生活史 隔離経験を生きるということ．東京：青弓社； 2012．
Sakata K. [Hansenbyosha no seikatsushi: Kakuri keiken oikiru to iukoto.] Tokyo: Seikyusha; 2012. (in Japanese)[33] 全国ハンセン病療養所入所者協議会，編．復権への日月 ハンセン病患者の闘いの記録．東京：光陽出版
社； 2001．
Zenkoku Hansenbyo Ryoyojo Nyushosha Kyogikai.
[Fukken eno jitsugetsu: Hansenbyo kanja no tatakai no
kiroku.] Tokyo: Koyo Shuppansha; 2001. (in Japanese)[34] 岡田靖雄．差別の論理 魔女裁判から保安処分へ．東京：勁草書房； 1972．
Okada Y. [Sabetsu no ronri: Majo saiban kara hoan shobune.] Tokyo: Keiso Shobo; 1972. (in Japanese)[35] 岡田靖雄．日本精神科医療史．東京：医学書院；
2002．
Okada Y. [Nihon seishinka iryoshi.] Tokyo: Igaku Shoin;
2002. (in Japanese)[36] 金川英雄．日本の精神医療史 明治から昭和初期まで．
東京：青弓社； 2012．
Kanagawa H. [Nihon no seishin iryoshi.] Tokyo: Seikyusha; 2012. (in Japanese)[37] 内田博文．医事法と患者・医療従事者の権利．東京：
みすず書房； 2021．
Uchida H. [Ijiho to kanja / iryo jujisha no kenri.] Tokyo:
Misuzu Shobo; 2021. (in Japanese)[38] 古屋龍太．精神医療の歴史に照らして考える精神障
害者監禁事件―呉秀三「精神病者私宅監置ノ実況」
から 100 年，病院と地域は何が変わったか？―．病院・地域精神医学．2019;61(2):125-129.

12

Furuya R. [Seishin iryo no rekishi ni terashite kangaeru
seishin shogaisha kankin jiken: Kure Shuzo “Seishin byosha shitaku kanchi no jikkyo” kara 100 nen, byoin to chiiki wa naniga kawattaka?] Japanese Journal of Hospital andCommunity Psychiatry. 2019;61(2):125-129. (in Japanese)[39] 横田泉．精神科病院を「収容所」から「病院」にするために〜私の臨床経験〜．病院・地域精神医学．
2019;61(3):211-214.
Yokota I. [Seishinka byoin o “shuyojo” kara “byoin” nisurutameni: Watashi no rinsho keiken.] Japanese Journalof Hospital and Community Psychiatry. 2019;61(3):211214. (in Japanese)[40] 桐原尚之．精神障害者の社会運動による 1987 年の 精 神 衛 生 法 改 正 へ の 主 張． 福 祉 社 会 学 研 究．
2021;18:105-128.
Kirihara N. [Claims against revision of the Mental
Health Act of 1987 by social movements of people withpsychosocial sisabilities.] Journal of Welfare Sociology.
2021;18:105-128. (in Japanese)[41] 渡辺伸一．水俣病発生地域における差別と抑圧の論理―新潟水俣病を中心に―．環境社会学研究．
1998;4:204-218.
Watanabe S. [The logic of discrimination and oppressionin areas with outbreak of Minamata disease with specialreference to the case of Niigata Minamata disease.] Journal of Environmental Sociology. 1998;4:204-218. (in Japanese)[42] 下田守．水俣病とカネミ油症―共通の問題を中心に―．水俣学研究．2014;5:49-64.
Shimoda M. [Minamata disease and Kanemi Yusho: On
some common problems.] Journal of Minamata Studies.
2014;5:49-64. (in Japanese)[43] 宇田和子．カネミ油症事件における「補償制度」の特異性と欠陥―法的承認の欠如をめぐって―．社会学評論．2012;63(1):53-69.
Uda K. [Peculiarities and defects in the compensation
system for victims of Kanemi oil poisoning: Lack of legal
recognition of victims.] Japanese Sociological Review.
2012;63(1):53-69. (in Japanese)[44] 小 長 谷 正 明． ス モ ン ― 薬 害 の 原 点 ―．IRYO．
2009;63(4):227-234.
Konagaya M. [SMON: Yakugai no genten.] Iryo.
2009;63(4):227-234. (in Japanese)[45] 友澤悠季．
「社会学」はいかにして「被害」を証すのか―薬害スモン調査における飯島伸子の仕事から―．
環境社会学研究．2012;18:27-44.
Tomozawa Y. [How can sociology explain pain as damage?: A perspeetive on Nobuko Iijimaʼs investigation into
SMON patients.] Journal of Environmental Sociology.
2012;18:27-44. (in Japanese)[46] 葛原茂樹．日本の難病対策の歴史と新たな難病対策．

J. Natl. Inst. Public Health, 73 (1) : 2024

A history of Japanese patients
公衆衛生．2016;80(6):390-399.
Kuzuhara S. [Nihon no nambyo taisaku no rekishi toaratana nambyo taisaku.] Koshu Eisei. 2016;80(6):390399. (in Japanese)[47] 葛原茂樹．わが国の難病対策の歴史と，難病法下での医療と研究．医学のあゆみ．2016;258(12):10971103.
Kuzuhara S. [Historical review of Japanʼs governmental
policy on “Nambyo” (the specified rare and intractablediseases) and new policy after “Nambyo law”.] Igaku no
Ayumi. 2016;258(12):1097-1103. (in Japanese)[48] 久留聡．スモン原因解明から 50 年．臨床神経学．
2021;61(2):109-114.
Kuru S. [Fifity years after the identification of the cause of
SMON.] Rinsho Shinkeigaku (Clinical Neurology). 2021;
61(2):109-114. (in Japanese)[49] 別府宏圀．日本における薬害の歴史 半世紀を振り返って．医学のあゆみ．2014;251(9):701-705.
Beppu H. [History of drug-induced sufferings in Japan.]
Igaku no Ayumi. 2014;251(9):701-705. (in Japanese)[50] 市川誠一．感染症との共生を考える エイズにおける偏見・差別と“Living Together”による啓発から．保健師ジャーナル．2021;77(1):19-24.
Ichikawa S. [Kansensho tono kyosei o kangaeru: AIDSni okeru henken sabetsu to “Living Together” ni yoru
keihatsu kara.] Japanese Journal for Public Health Nurse.
2021;77(1):19-24. (in Japanese)[51] 武藤香織．COVID-19 に関する差別的言動の防止に関する取組を振り返って．医療と社会．2022;32(1):8393.
Muto K. [Efforts to prevent stigmatizing and discriminatory behaviors related to COVID-19 in Japan.] Iryo toShakai. 2022;32(1):83-93. (in Japanese)[52] 新村拓．近代日本の医療と患者：学用患者の誕生．
東京：法政大学出版局； 2016．
Shinmura T. [Kindai Nihon no iryo to kanja: Gakuyo kanja
no tanjo.] Tokyo: Hosei Daigaku Shuppankyoku; 2016. (inJapanese)[53] 長宏．患者運動．東京：勁草書房； 1978．
Osa H. [Kanja undo.] Tokyo: Keiso Shobo; 1978. (in Japanese)[54] 特定非営利活動法人難病支援ネット・ジャパン．日
本の患者会Web版．https://pg-japan.jp/ (accessed 202311-11)
Tokutei hieiri katsudo hojin nambyo shien net Japan.
[Nihon no kanjakai Web ban.] https://pg-japan.jp/ (in Japanese)(accessed 2023-11-11)[55] 日本患者同盟四〇年史編集委員会，編．日本患者同盟四〇年の軌跡．京都：法律文化社； 1991．
Nihon Kanja Domei 40 nen shi Henshu Iinkai. [Nihon
kanja domei 40 nen no kiseki.] Kyoto: Horitsu Bunkasha;

1991. (in Japanese)[56] 大谷藤郎．ハンセン病患者と人権 その歴史からの教訓．公衆衛生 2008;72(1):28-32.
Ohtani F. [Hansenbyo kanja to jinken: Sono rekishi kara
no kyokun.] Koshu Eisei. 2008;72(1):28-32. (in Japanese)[57] 葛城貞三．難病患者運動：「ひとりぼっちの難病者をつくらない」滋賀難病連の歴史．東京：生活書院；
2019．
Katsuragi T. [Nambyo kanja undo: “Hitori bocchi nonambyo sha o tsukuranai” Shiga nambyoren no rekishi.]Tokyo: Seikatsu Shoin; 2019. (in Japanese)[58] 伊藤たてお．患者会の活動と難病法（難病の患者に対する医療等に関する法律）の成立への関わり―患者会の視点から―．医療と社会．2018;28(1):27-36.
Ito T. [Patient groupsʼ advocacy activity and nambyo act(the iatric services to patients suffering from intractabledisease): From the view point of patient groups.] Iryo toShakai. 2018;28(1):27-36. (in Japanese)[59] 伊藤たてお．患者会からみた難病法と指定難病制度．
医学のあゆみ．2016;258(12):1128-1132.
Ito T. [A viewpoint from a patientsʼ group on the act on
medical treatment for patients with intractable diseases
and the system on specified diseases.] Igaku no Ayumi.
2016;258(12):1128-1132. (in Japanese)[60] 一般社団法人日本難病・疾病団体協議会．https://nanbyo.jp/jpatowa/ (accessed 2023-11-11)
Ippan Shadan Hojin Nihon Nambyo Shippei Dantai Kyogikai. https://nanbyo.jp/jpatowa/ (in Japanese)(accessed2023-11-11)[61] 平野亙．苦情解決とセカンドオピニオン―患者の権利オンブズマンに寄せられた相談事例から．医学のあゆみ．2006;218(7,8):731-735.
Hirano W. [Role of second opinion from the viewpointof medical complaints procedures.] Igaku no Ayumi.
2006;218(7,8):731-735. (in Japanese)[62] 平野亙．医療における苦情解決に関する考察―「患者の権利オンブズマン」の 18 年から―．医学哲学 医学倫理．2018;36:63-70.
Hirano W. [A study on complaint procedures in medicalcare based on 18 years of experience of ʻThe Patientsʼ
Rights Ombudsmanʼ.] Journal of Philosophy and Ethics in
Health Care and Medicine. 2018;36:63-70. (in Japanese)[63] 水 口 真 寿 美． 市 民 に よ る 薬 害 監 視 ― 薬 害 オ ン
ブ ズ パ ー ス ン の 活 動 を 通 し て ―． 薬 剤 疫 学．
1999;4(1):125-128.
Minaguchi M. [Shimin ni yoru yakugai kanshi: Yakugaiombudsperson no katsudo o toshite.] Japanese Journal of
Pharmacoepidemiology. 1999; 4(1):125-128. (in Japanese)[64] 薬害オンブズパースン会議．
Yakugai Ombudsperson Kangi. https://www.yakugai.gr.jp/(in Japanese)(accessed 2023-11-11)

J. Natl. Inst. Public Health, 73 (1) : 2024

13

TAKEMURA Shinji[65] 里 見 和 夫． 大 阪・ 精 神 医 療 オ ン ブ ズ マ ン 制 度
入 院 患 者 の 人 権 保 障 を め ざ し て． 精 神 科 看 護．
2003;30(8):44-50.
Satomi K. [Osaka seishin iryo ombudsman seido: Nyuin
kanja no jinken hosho o mezashite.] Japanese Journal of
Psychiatric Nursing. 2003;30(8):44-50. (in Japanese)[66] 山本深雪，竹端寛．変わらない現場と変革の可能性―大阪の精神医療オンブズマン制度発足に至る取り組みの中で―．病院・地域精神医学 2004;46(4):400403.
Yamamoto M, Takebata H. [Kawaranai gemba to henkaku no kanosei: Osaka no seishin iryo ombudsman seido
hossoku ni itaru torikumi no nakade.] Japanese Journal of
Hospital and Community Psychiatry. 2004;46(4):400-403.
(in Japanese)[67] 竹 端 寛．NPOの ア ド ボ カ シ ー 機 能 の「 小 さ な 制
度 」 化 と そ の 課 題 ― 精 神 医 療 分 野 のNPOの 事 例
分析をもとに―．ノンプロフィット・レビュー．
2011;11(1):33-43.
Takebata H. [The institutionalization of NPOʼs advocacy
function in local government and its challenge: from theanalysis of the NPO in psychiatric field.] The Nonprofit
Review. 2011;11(1):33-43. (in Japanese)[68] 感染症の予防及び感染症の患者に対する医療に関する法律．平成十年法律第百十四号，1998．
[Act on the Prevention of Infectious Diseases and Medical
Care for Patients with Infectious Diseases.] Act No. 114
of 1998, 1998. https://elaws.e-gov.go.jp/document?lawid=410AC0000000114 (in Japanese)(accessed 2023-11-1411)[69] INVOLVE. Briefing notes for researchers: Public involvement in NHS, public health and social care research. Eastleigh: INVOLVE; 2012.
[70] 武藤香織．臨床研究への患者･市民参画政策の黎明期に―「経験ある被験者」の貢献を考える―．医療と社会．2018;28(1):129-139.
Muto K. [The role of “experienced subjects” in the implementation of patient and public involvement policy inJapan.] Iryo to Shakai. 2018;28(1):129-139. (in Japanese)[71] 日本医療研究開発機構．患者･市民参画（PPI）ガイドブック〜患者と研究者の協働を目指す第一歩として 〜．https://www.amed.go.jp/ppi/guidebook.html (accessed 2023-11-11)
Japan Agency for Medical Research and Development(AMED). [Patient and Public Involvement (PPI): A guidefor collaboration between patients and researchers.]
https://www.amed.go.jp/en/ppi/guidebook.html (accessed2023-11-11)[72] 八巻知香子，高山智子．信頼できるがん情報の提供と研究における患者・市民の参画の試み：国立がん研究センターがん対策情報センター「患者・市民パネル」のこれまでの活動と今後．科学技術社会論研究．
2020:18:128-136.
Yamaki C, Takayama T. [Center for cancer control andinformation services patient-public panel activities todisseminate reliable information and encourage clinicalresearch.] Journal of science and technology studies.
2020:18:128-136. (in Japanese)

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A history of Japanese patients＜総説＞
日本の患者の歴史―彼らは何をされ，何をしてきたのか？―
武村真治
国立保健医療科学院公衆衛生政策研究部

抄録
日本の患者たちは様々な苦難に耐えながらも，自らの境遇を改善するために闘い，権利を勝ち取ってきた．本稿では，日本における患者の歴史，つまり患者に対して行われたことと，患者によって行われたことを概説する．
19 世紀後半にコレラが大流行した際，患者は避病院に隔離され，ほとんど治療されないまま放置された．1900 年代に入り工業化が進展するとともに，貧困層，特に女工の間で結核が流行するようになったが，療養所が不足していたため十分な治療がなされなかった．性感染症は「花柳病」と定義され，売春婦から男性へ，男性から妻へと社会全体に拡大し，女性は売春婦としての悲劇，妻としての悲劇に耐えてきた．20 世紀初頭から，浮浪徘徊するハンセン病患者は療養所に収容されるようになり，その後全てのハンセン病患者を療養所に入所させ，生涯完全に隔離する政策が進められた．ハンセン病患者の中には，監禁，減食，謹慎，譴責などの処罰を受け，清掃，洗濯，重症患者の看護な
どの「患者作業」を強いられ，断種される者もいた．精神疾患患者の多くは私宅に監置されていたため，精神病院の設立が推進された．精神病院では，手錠，足かせ，鎖などの拘束具が使用されることもあった．その後私宅監置は禁止され，自傷他害の恐れのある精神疾患患者を入院させる措置入院制
度が設けられた．
患 者 に 対 す る 差 別 は， 上 記 の 疾 患 だ け で な く， 公 害 病， 職 業 病， 医 原 病， 難 病， エ イ ズ，
COVID-19 も対象となった．また貧困の患者を研究や教育に利用する「学用患者」と呼ばれる仕組みも存在していた．
第二次世界大戦後，患者たちは自身の要求や問題を社会に積極的に訴えるようになり，それは世界
でも珍しい「患者運動」へと発展していった．患者会は当初，結核やハンセン病の療養所の患者によって組織されたが，1950 年代以降，難病や公害病など，様々な疾患の患者会が設立されるようになった．
1970 年代に入ると，疾患ごとに設立された患者団体が互いに連携するようになり，2005 年 5 月，患者団体の統一組織として日本難病・疾病団体協議会（JPA）が設立された．
患者の人権の擁護や生活・医療の保障については法律等で明文化されるようになった．しかし，特に難病患者が求めている，疾患の原因解明や治療法の確立には至っておらず，患者自身が積極的に研究開発に関与する「患者･市民参画（PPI）」の推進が必要である．
キーワード：患者会・患者団体，差別，ハンセン病，難病，患者･市民参画（PPI）

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