Isolation of leprosy patients in the United States
In 1865, Hawaii established a policy for the quarantine and isolation of HD patients. A leper settlement was established at Kalaupapa on Molokai island, and the Kalihi Receiving Station was opened on Honolulu to diagnose cases and provide emergency treatment. In 1873, when Mycobacterium leprae was discovered by Hansen and leprosy was thus proved to be a contagion, the seclusion of patients in their homes or in hospitals was advocated for disease prevention. By 1894, Louisiana had established a leprosarium, and several other states, such as New York and California, had also introduced similar isolation policies for HD patients. The First International Congress on Leprosy held in Berlin in 1897 recommended isolation as the appropriate policy measure against leprosy. In 1909, the U.S. government built another leper colony in the Philippines on the Island of Culion.
After several national and state surveys of HD patients, the need for a national policy to control HD and the desirability of patient isolation were discussed repeatedly during the 1890s. The first legislation, passed in 1898, authorized a thorough investigation of leprosy. A commission was appointed, and based on its recommendation, legislation was introduced that allowed for the establishment of a national leprosarium for the segregation of lepers with the goal of preventing the spread of leprosy in the United States. It is worth noting that scientists were never unanimous about the necessity of isolation. Scientific publications at the time described HD as a relatively non-contagious disease.
After succeeding reports and debates, legislation was passed in 1917 that provided for purchase of a site and receipt of any person afflicted with leprosy who presented himself or herself for care, detention, and treatment, or who might be apprehended under authority of the United States Quarantine Acts. The American Academy of Medicine, the American Medical Association, and the American Dermatological Association expressed their support for the isolation policy, arguing that patient isolation serves for disease control and patient treatment, as well as protection of patients from social stigma and ostracism. The 1917 legislation also directed that public health employees assigned to the institution be paid one and one-half times the regular pay due to the disagreeable and dangerous nature of the service.
Having failed to locate a new site, in 1921 the U.S. government took over the Louisiana Leper Home in Carville, Louisiana, and the United States Public Health Service (PHS) opened the US Marine Hospital Number 66 as a National Leprosarium. The rules "Regulations governing the care of lepers: regulations for the government of leprosaria and for the apprehension, detention, treatment, and release of lepers" were drawn up by the Surgeon General in 1922 to implement the 1917 legislation. The 1922 rules reiterated the admission options (voluntary or involuntary), prohibited patients from leaving the sanitarium grounds, and provided that patients shall not "hold communication" with patients of the opposite sex. The rules also outlined a procedure for discharge of patients, which included a period of one year of special observation for any signs of leprotic retrogression after medical tests showed no signs of the disease. After this year, the patients were requested to appear before a board of three or more medical officers who might pronounce the patient to be no longer a menace to public health.
The institution was gradually expanded in the year 1933, having 65 rooms and outpatient facilities in 1941. By 1945, there were 369 inpatients. During those years, there was no really effective treatment of the disease. Most of those at the facility were involuntarily admitted (only 15% of admissions between 1930 and 1945 were reportedly voluntary).
US period I (1940 through 1950))
In 1941, Dr. Guy Faget at the National Leprosarium started a clinical trial of Promin, a sulfone drug, for the treatment of HD. Its beneficial effects became rapidly known and were reported within a few years in leading medical journals, such as Public Health Reports and Journal of the American Medical Association (JAMA). Other forms of sulfone drugs, Diasone and Promazole, were also developed and replaced the traditional HD treatment of applying chaulmoogra oil. The international academic community paid close attention, and the 1946 Conference on Leprosy in Rio de Janeiro reported significant advances from the introduction of the sulfone group of drugs.
The enactment of the Public Health Services Act of 1944 could have provided a forum for discussion and revision of the US HD policy. Parts D and G of the Act, however, literally duplicated the 1917 Act, apparently without discussion. As before, its Section 331 states – "that the Service (PHS) shall, in accordance with regulations, receive into any hospital of the Service suitable for his accommodation any person afflicted with leprosy who presents himself for care, detention, or treatment, or who may be apprehended under section 332 (regulation) or 361 (quarantine) of this Act, and any person afflicted with leprosy duly consigned to the care of the Service by the proper health authority of any State, Territory, or the District of Columbia. The Surgeon General is authorized, upon the request of any health authority, to send for any person within the jurisdiction of such authority who is afflicted with leprosy and to convey such person to the appropriate hospital for detention and treatment."
Only a year later, in 1945, the American Public Health Association advised against isolating people with leprosy. It was by then well established that the majority of the population had a natural immunity to leprosy, and that it was only mildly contagious to the rest. 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, if any, required isolation. However, at that point, scientists were again not unanimous concerning patient isolation policy. Dr. Faget, who should have known the effects of sulfones better than anyone else, wrote in Public Health Reports that the only reliable means to eradicate leprosy is isolation. Dr. G. W. McCoy, an ex-official of the PHS and Dean of the Louisiana State University Medical School, on the other hand, recommended that since infectivity varies depending on clinical types, the universal isolation policy should be abandoned. He stressed that when there is room to question infectiousness, it should be used to serve patients (meaning to protect patients' liberty).
In response to these debates, the Federal Security Agency (FSA) set up under the Surgeon General the National Advisory Council on Leprosy. The Council discussed the issues raised by the United Patients' Committee for Social Improvement and Rehabilitation – composed of the Patients' Federation, Veterans/Legionnaires, and the staff of The Star (a monthly periodical published by the HD patients) – which had expressed its objection to the Public Health Services Act. Abolition of forced isolation and detention and the broadening of outpatient treatment services were discussed, but only the latter was supported. After a while, an experimental project for outpatient services was established in New Orleans.
Efforts to revise the law began soon after the enactment of Public Health Services Act. In 1948, G. H. Rarey (US Army – retired Colonel, national vice president of the American Federation of the Physically Handicapped) and Paul Strachan (president, American Federation for the Disabled) drafted the National Leprosy Bill, and asked Congressman Charles J. Kersten (R-Wisconsin) to submit it to Congress. In the following year, a similar bill, the National Leprosy Act was submitted by Senator Claude D. Pepper. Both of these draft legislation intended drastic changes in leprosy control policy, including: dissemination of pertinent facts concerning leprosy (to promote an enlightened public opinion, a new and more accurate understanding of leprosy); treatment of leprosy patients (to establish leprosy treatment principles, methods, and regulations for administering leprosy treatment more in harmony with the customs of society as applied to the care and treatment of persons afflicted with other diseases; to arrange treatment centers, both inpatient and outpatient services); the National Advisory Council on Leprosy; rehabilitation and reemployment of leprosy patients; financial assistance for leprosy patients and their dependents; compensation for disability incident to leprosy; and expansion of leprosy research.
At the Congressional hearings on the bills, the experts' testimony took different positions. As a drafter of the bill, Colonel Rarey, who had served in the Philippine Islands and encountered many leprosy patients, argued insistently against the segregation of leprosy patients, claiming that it was not effective, could destroy patients' social lives, and might hinder patients from seeking proper treatment. He stated, "Many cases of this disease are not communicable. The remainders are classified by leprologists as feebly communicable. The status and low degree of communicability of leprosy in the US does not justify continuance of the present compulsory segregation policies." He also criticized the PHS, arguing that the FSA's favoring of segregation erred on the ultraconservative side of this question.
On the other side, J. Donald Kingsley, Acting Administrator of the FSA, presented opposition to the bill. Although he indicated sympathy with the basic objectives of the bill, the necessity for law revision was denied. He argued that most of the objectives of the bill could be more effectively achieved through intensification of activities already authorized by the existing law. The bill was criticized as defective in attempting to divide responsibility for the treatment and care of patients not hospitalized in PHS hospitals, between the PHS and the various federal, state, and local governmental agencies. Especially stressed was the point that the proposed Act does not meet squarely the problems of forced detention of leprosy patients: It was insisted that the existing authority of the PHS should not be repealed or cast in doubt without careful consideration and provision for alternative methods of meeting the problem, should need arise. The FSA, while recognizing the accumulating evidence showing the effectiveness of the sulfone drugs, thus retained a conservative position.
The arguments of the FSA were accepted, and as a consequence, those bills, though submitted repeatedly through 1954, were never enacted. The only leprosy-related legislation passed in this period was a bill enacted in 1951, which dealt with transportation costs for released patients[42, 43]. At the administrative level, however, a series of changes was introduced. In 1946, patients were given the right to vote. In 1947, the PHS removed HD from the list of quarantinable diseases which required a travel permit. In 1948, the barbed wire fence was removed from the facility, and the first active patient was released to the care of her private physician. In the same year, the PHS officially recognized the name Hansen's disease as a replacement for the term leprosy. In the 1950s, patients were allowed to marry. Twelve negative monthly tests were no longer required for discharge; instead those who qualified for discharge were required to be financially stable and assure authorities that there were no children living where they intended to go.
US period II (1950 until 1980)
In the early 1950s, patient isolation was criticized more and more and eventually condemned at the International Congress on Leprosy and at other international conventions . Following advice that the isolation of patients should be limited to infectious cases, the abolition of compulsory isolation was repeatedly recommended also by WHO and UNICEF. Definition of the cases suitable for temporary isolation gradually became delineated.
In 1952, a decision was made that no administrator should stay at the institution for more than three years. Accordingly in 1953, the government appointed a new director, Dr. Edward M. Gordon, a former director of the PHS hospital in Chicago. Soon after his arrival, he announced that those who did not need to be medically hospitalized should leave the institution. His policy was that those able-bodied residents diagnosed as arrested should be discharged; that discharge should be recommended to those who were arrested and partially disabled; that those who were disabled (blind or physically handicapped) could stay in the institution, but could leave if their relatives or friends offered appropriate care. He also passed a rule prohibiting able-bodied residents from working in the institution. Fearful of losing their homes and jobs, some of the patients sent lawyers to Washington to lobby elected officials. After three years, Dr. Gordon left for Fort Monroe in Virginia, and Dr. Edgar B. Johnwick was appointed as the new director. In 1956, on the third day of his duty, Dr. Johnwick declared before the patients that no one would be discharged from the hospital against his/her will and that no one would be kept in the hospital against his/her will.
During this period, scientists, while acknowledging the clinical effects of sulfones and the distinction between infectious types, were not unanimous in negating the utility of patient isolation. Dr. L. F. Badger of Leprosy Control Unit, the Communicable Disease Center (later, renamed as Center for Disease Control), stressed in 1956 the importance of isolation of infectious patients, as well as the need for patient followup and continued treatment of arrested cases. Conversely, in 1958, Dr. Meyer, Medical Director at Carville, insisted that as disease control measure, isolation is not necessary in many cases and has serious defects. No overt controversies were found after that in the US literature. Meanwhile in 1960, the World Health Organization advised against isolation and in 1963 at the 8th International Leprosy Congress in Rio de Janeiro, the International Leprosy Association recommended against isolation and furthermore recommended that leprosy needed no special care beyond that afforded other communicable diseases.
The last compulsory isolation was reportedly enforced in 1960, and Part 32 of the Federal Code of Regulations "Medical Care for Persons with Hansen's Disease and Other Persons in Emergencies" dropped the term "detention" in 1975. It should be noted that all these policy changes were made through administrative action, not by changing statutory law. Law revision was not visible on the agenda as these policy changes proceeded. Even in 1974 when Hawaii ruled that all future new cases of the disease would be treated as outpatients, no debate took place on the federal level. Compulsory isolation was terminated as the practice of involuntary admission and that of forced institutionalization ended.
US period III (Post 1980 through 2000)
The driving force to terminate the isolation policy legislatively and abolish the leprosarium came not from new medical findings but from arguments for economic efficiency and budget cutting. In 1981, the Reagan administration and Congress agreed that it no longer made sense for the government to run public health hospitals, since Medicare, Medicaid, and the general oversupply of hospitals made specialized hospitals obsolete. A congressional subcommittee, backed by the Omnibus Budget and Reconciliation Act, thus targeted the nation's nine public health hospitals, including the National Leprosarium at Carville. However, lobbied by the several groups which had developed over the years to oppose termination – including the community of Carville, the patients, a society of Legionnaires and veterans -, Congressman Gillis Long fought for an exemption for Carville. Consequently, the leprosarium survived the challenge based on the argument that HD patients need special care and considerations (The institution was renamed as Gillis Long Hansen's Disease Center later in 1986).
To the Congress, after 1981, Congressmen Henry A. Waxman and Gillis W. Long instead proposed a bill to change HD policy. Avoiding the issue of closing down the Carville institution, the bill was intended to permit treatment of HD outside PHS facilities and to eliminate additional pay for personnel treating HD. In the report attached to the bill, Richard Ashbaugh (Acting Director, Bureau of Medical Services, PHS) indicated the PHS's support for the bill. He stated, "Leprosy pay ... was instituted because of a mistaken belief that workers were at significant risk in contracting Hansen's disease ... Not only is leprosy pay an unjustifiable expense, it actually increases the stigma associated with Hansen's disease." He went on to say, "The PHS is strongly committed to the least restrictive possible treatment of Hansen's disease ... " A similar act was submitted in the subsequent year, but also not enacted at least in part because beneficiaries of the center's payroll, including the patients working at the facility, made a strong objection to the bill.
Without legislative support, the PHS had been subsidizing ambulatory care centers for HD patients, outside the HD Center since 1981. The PHS National Outreach Program started 11 regional outpatient services nationwide. When the PHS in 1983 did a formal review of the Center, it issued a report which highlighted the Center's economic inefficiency, making that the focal point of the discussion. The Center at that time housed only 200 patients but comprised 98 buildings on 337 acres. The staff included 317 civil service and PHS workers and 125 part-time patient employees. The PHS recommended that the Center continues its custodial care and research programs, but asked for more outpatient clinics and a study of the elimination of residential care. In the following year, the PHS set up a utilization review committee in Carville to review periodically the conditions of patients who had been hospitalized more than two years, for their possible discharge ability.
Finally, legislation was made. In 1985, PL99-117 was enacted which stated the PHS ... "shall provide care and treatment (including outpatient care) without charge ... to any person suffering from Hansen's Disease who needs and requests care and treatment for that disease"[62, 63]. The term "detention" was deleted from the Act, though the provision of residential care was not completely negated. The hazardous duty salary supplements, while had been reduced to one and one-quarter time, were discontinued for new hires.
In 1988, three years after the legislation, the PHS published its report "Strategic Plan, National Hansen's Disease Center (NHDC)." The plan reiterated the situation of the NHDC, and evaluated whether it would be cost effective and feasible to contract out the patient care activities of the Center and transfer the research activities elsewhere. The report recommended expanding the Center's mission to include other nerve-desensitizing diseases, contracting out long-term patient care, and moving the Center's research facilities to Baton Rouge. It also argued the necessity of maintaining the Center so that patients who had lived at Carville for decades could be cared for compassionately in familiar surroundings. The report reached the definitive conclusion that there should be no new resident admitted to the Center, so that over time the population would dwindle to nothing and the entire facility could be closed. Accordingly in that same year, Dr. John Duffy, a new director, began the move of the Center's acute care, research and educational functions to Baton Rouge, while allowing the current residents to stay in Carville. Thus, in practice, both voluntary and involuntary isolation and hospitalization ended.
Nonetheless, despite these developments, closure of the leprosarium required more than a decade, thwarting both a 1990 plan to transform the institution into a geriatric prison and a 1996 plan to make it a federal prison for minimum security geriatric patients. The efficiency argument made by the PHS was always counterposed by the equity and civil rights arguments offered by the patients and their allies. The patients, though demanding that their basic human rights and freedom be restored, claimed a right to lifelong care by the government. Only the research branch was moved in 1992 to a location at Louisiana State University in Baton Rouge.
Then, agenda was set again by the economic efficiency argument, but this time with a new set of policy alternatives. Representative Richard H. Baker proposed that the site be used as a job training school, and that patients be given an annual living subsidy if they departed. Baker, US District Judge Frank Polozola, and Jim Mitchell (PHS) visited Carville to discuss with patients and staff members the idea of closing the Center. This proposal was quashed once when Congressman Cleo Field, who represented the district from 1992 to 1996, objected. However, when the 1996 election returned the district of the Center (District 6 of Louisiana) to Baker, he resubmitted the bill with the proposal that the site be transferred to the State of Louisiana. This time his plan was adopted.
PL 105-78, "Relocation of Gillis W. Long Hansen's Disease Center" was signed into law in 1997. The legislation returned the physical facility to the State of Louisiana without charge, though it specified that the Carville site must be used for health or educational purposes for 30 years. It offered a voluntary separation incentive payment to civil service employees. It directed that at or through the Center, the Secretary of the Department of Health and Human Services (DHHS) must provide short-term care and treatment without charge, including outpatient care, for Hansen's disease and related complications. The Secretary, however, was not permitted to provide long-term care for any disease or complication through the Center. For long-term-care patients, the Secretary was instructed to provide for long-term care without charge for the remainder of the life of the patient. The bill also directed the relocation of the patients at the Center to Baton Rouge within three years unless such relocation was not feasible, and it reassured the remainder that they could stay at Carville as long as they were able to live independently. It further offered a $33,000 annual stipend to any patient who chose to leave the institution, and this irrevocable option could be chosen at anytime by a patient. In August 1999, the federal government transferred the leprosarium to the State of Louisiana for use as a Job Corps training site. The Louisiana National Guard initiated its Youth Challenge program shortly after that. Some patients left Carville going either to the Baton Rouge facility or to the other places, but quite a few remained. Today, the NHDC in Baton Rouge admits about 180 HD patients, and treats several hundred patients annually on an outpatient basis.
Isolation of leprosy patients in Japan
Since ancient times, historical records indicate, many HD patients lacked permanent homes, leaving them to wander around living in both towns and rural areas, and sometimes creating their own colonies. Leprosy had been understood to be a hereditary disease, but since the mid 19th century, the view that it was the result of a contagion became known gradually, first among the medical experts, and then among the public. The recommendation of the first International Conference on Leprosy held in Berlin in 1897 led Japanese experts to support patient segregation, although not always unanimously. A national survey was conducted about leprosy, and Law No. 11, "The Act on Leprosy Prevention," was passed in 1907. At that time, the Ministry of Internal Affairs (MIA) explained that despite the mild infectiousness of leprosy, Law No. 11 was required for the sake of vagrant lepers, those without means of support. Five public leprosaria were established by local governments in 1909. 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.
Subsequently, in 1931, the first national leprosarium was opened, and at that time, 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. The Ministry of Health and Welfare (MHW), the successor of the MIA, nationalized all of the existing leprosaria so as to coordinate their activities. Ministerial officials issued manifests that leprosy should be eradicated from Japan through absolute segregation. In accordance with the increasing institutional capacity of leprosaria, the number of patients sent to leprosaria increased considerably.
Japan period I (1940 through 1950s)
The sulfone drug Promin came to Japan in 1946 shortly after WWII ended. Its significantly beneficial effects were reported shortly at the Congress of the Japan Leprosy Association. However, many physicians remained unconvinced of the real efficacy of the drug: They argued that the disease could relapse, even though it might show initial response[77, 78]. The new drugs were difficult to obtain either by import or by domestic production, but patients were desperate to try them. They organized the Federation of National Leprosarium Patients (FNLP) and launched lobbying activities to acquire the drug. In response, the Diet (the legislative body in Japan) approved in 1950 a budget for sulfones. The drugs were delivered to leprosaria, and, a year later, the first 35 patients were officially discharged as a result of their improvement.
Meanwhile after WWII, during the late 1940s and early 1950s, a new government was established in Japan, and legal systems were thoroughly reviewed and revised in compliance with the new Constitution. As part of that process, leprosy wound up on the agenda in the Diet in the early 1950s during discussions of social security systems. Debate went on until the revision of the existing law of 1931.
On February 15, 1950, leprosarium directors Drs. Kensuke Mitsuda, Yoshinobu Hayashi, and Ryoichi Yajima testified at the Health and Welfare Committee of the House of Representatives, along with the Director of the Medical Affairs Bureau, the MHW. They insisted on the necessity of continued isolation of leprosy patients, argued for the desirability of the government subsidy for Promin, and recommended the expansion of leprosaria. On October 10, 1951, the Health and Welfare Committee of the House of Councilors heard testimony from five experts, including three leprosarium directors, Drs. Hayashi (then also President of the Japan Leprosy Association), Mitsuda and Miyazaki. Dr. Hayashi stressed the fact that there were approximately 9000 institutionalized patients, and 6000 outside the leprosaria who posed a threat of infection. He argued that leprosaria should be expanded to institutionalize all of the latter and that hazardous pay (about 5–10% at that time) should be increased as in the US. Dr. Mitsuda suggested that a more stringent law should be implemented to require isolation in order to prevent spread of the disease. He contended that though the necessity of isolation is sometimes refuted in the US, leprosy, regardless of its types, must be isolated to prevent infection and that sterilization should be recommended to patients for this purpose. He stressed that the new drugs, although promising in treatment, could not be expected to eradicate leprosy. Dr. Miyazaki essentially agreed with Dr. Mitsuda, adding that patients, many of them with deformities and disabilities, could not be released from leprosaria while they remained unaccepted by society and unable to live outside. He suggested that public enlightenment efforts would be advisable. The other experts argued for expansion of research into leprosy.
The bill to revise the Leprosy Prevention Law was submitted as a cabinet bill in 1953. The Minister of Health and Welfare explained to the House members that leprosy is hard to cure, that patient isolation is the only measure that prevents leprosy infection, and that the welfare of patients and their families should be protected by the government. Masayoshi Yamaguchi, Director of Public Health Bureau, the MHW, stated that patient isolation is the sole measure for leprosy prevention and protection of the public welfare, and that compulsory isolation should be warranted by law as a last resort. He suggested that patients might be discharged when leprosarium directors consider their isolation unnecessary and recommended that temporary leave also be allowed at the discretion of directors. Facing the possibility of more stringent laws, the Patients' Federation expressed concern that the prospective law under consideration was focused too narrowly on social protection, while ignoring patients' rights.
The revised Leprosy Prevention Law of 1953 was in essence a reflection of the arguments of the experts and maintained a legal basis for compulsory isolation of patients proven to have bacilli and for prohibition of leave without permission. In response to patients' pleas, nine supplementary resolutions were adopted, including provisions for living stipends and patient work, improvement in living conditions, promotion of research, and installation of rehabilitation facilities. The MHW did initiate programs for patient rehabilitation, but the Ministry was still devising a plan to expand leprosaria capacity to hospitalize leprosy patients. The Notice of the Vice-Minister, issued soon after the promulgation of the Law, still described isolation as the only reliable means of prevention of the spread of the disease. A tentative standard for discharge was officially detailed by the MHW in 1956, but it was stated as not being intended to facilitate discharge. In practice, about 500 patients were admitted or readmitted to leprosaria in 1956, while fewer than 100 were discharged.
Japan period II (1960s through 1980s)
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. It provided that the Chief Executive may advise hospitalization and may also order an improved patient to leave the hospital. Inspired by the policies of the Ryukyu Islands and acquainted with the international recommendation that most leprosy patients should be treated on an outpatient basis, thus abolishing compulsory isolation, the Patients' Federation (FNLP) repeatedly voiced support for revision of the Leprosy Prevention Law of 1953. They repeatedly insisted that the Law lacked a scientific basis and violated human rights, and argued that they were victims of enforced segregation and of social stigmas fostered by the Law. In 1963, the Patients' Federation filed its petition for the revision of the Law, sending more than 200 patients to pressure the Diet and the MHW.
Despite these efforts, the Diet did not add revision of the Leprosy Prevention Law to its agenda. The MHW officials argued that the existing law legitimized compulsory isolation of leprosy patients, which in turn constituted the legal basis for the government's responsibility to provide them with care and a comfortable living environment. Revision of the Law might eliminate the leprosaria, making it impossible for the patients to live on public support. Overt transition of leprosy control to an outpatient basis could also lead to a similar outcome. It was also argued that the transformation of leprosaria from medical facilities to rehabilitation facilities would be difficult because of budget constraints. Concerned about the future of leprosaria, patients did not have the unanimity necessary for law revision. A 1965 survey disclosed that only 16% of patients had an intention to be discharged in the future while the rest felt that they were unable or unwilling to leave their leprosaria.
Leprosarium directors in Japan gradually relaxed the implementation of the law. Patients became increasingly free to leave their leprosaria, and abscondments were not punished after the 1960s. In addition, treatment began to be offered outside leprosaria, although on an informal outpatient basis. Concerned that law revision could eventually harm patients' welfare, patients, as well as the officials in charge, came to pay more attention to improving the leprosaria and providing other benefits for patients. The preservation of the Law was implicitly justified as a way to guarantee patients' welfare.
In May 1972, the Ryukyu Islands, where leprosy treatment was based on outpatient services, were returned to Japan. This return again focused the attention of both patients and medical professionals on policy issues. In 1976, when the Federation of Leprosarium Directors drafted a revision proposal which incorporated specific 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 specific discharge codes could result in forced discharge. As was seen in the 1960s, many patients remained hesitant to address the issue of law revision, and their movements focused more on compensation for low-wage patient labor and redressing the long-term compulsory segregation of the past. A decade later, in 1984, the Patients' Federation itself created a committee to examine revision of the Law, but continued to be concerned about the fate of their adopted homes, the leprosaria. Consequently, the Federation of Leprosarium Directors only directed that leprosaria should not be abruptly discontinued as many of their residents were already too old to leave.
The MHW endeavored to improve living conditions in national leprosaria in response to repeated pleas filed by patients, as well as discussions in the Diet. Medical staffing was increased, patient labor was gradually reduced or made more rewarding, and government allowances were increased for leprosaria and their patients. Officials did warn 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.
Japan period III (1980s through 2000)
When Fujio Otani became the Director General of the Tofu Kyokai Foundation, which had been established to serve patients with leprosy, the stalemate in policy change began to resolve. Otani was a medical officer in the MHW, and had been Chief of the Section of National Hospitals and Sanatoria in the 1970s, and Director General of Medical Affairs Bureau in the early 1980s. Recruited to the Foundation after his retirement, he also served as the Chairman of the Advisory Council on Public Health in the MHW. Since the recommendation in the mid 1980s of the UN Commission on Human Rights to improve psychiatric treatment in Japan, Otani had been inspired to act for the protection and restoration of human rights among patients. In 1989, when the Patients' Federation consulted with him on its draft petition on the law, he began to commit himself to the issue of law revision.
In 1992, encouraged by Otani, the Patients' Federation filed a petition with the Minister of Health and Welfare. Although many patients still worried about the fate of their leprosaria, Otani promised them that their homes would be maintained. In the following year, the Tofu Kyokai Foundation was officially consulted by the Ministry on the prevention policy for leprosy. A committee was established, composed of leprologists, medical experts, lawyers, media representatives, bureau officials and patients, and presided over by Otani. 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 HD. In 1994 at the 67th Congress of the Japan Leprosy Association (JLA), Otani gave a special lecture and stated that the existing Leprosy Prevention Law should be abolished since it was not scientifically justifiable and violated patients' human rights. Six months later, as a result, the Federation of Leprosarium Directors and the JLA publicly confirmed his opinion that the existing law should be abolished.
Upon the release of the report by the MHW committee 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 recommended abolition of the Law, continued provision of public support for existing patients, and the use of the term "Hansen's disease" in place of "leprosy" in laws and regulations. Finally in 1996, the "Act to Abolish the Leprosy Prevention Law," drafted by the MHW, was passed. It abolished the 1953 Law and at the same time codified the government's responsibility to provide existing HD patients with continuous medical and other social services. It was also provided 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.
At the time of the abolition of the old law, there were 5,413 patients in leprosaria, whose average length of stay was more than 40 years and whose average age was 72 years old. Only six of these patients actually left their leprosaria in the following two years. In response to lawsuits filed in the late 1990s, in 2001 the court awarded financial settlements to those who had been isolated under the earlier laws. The awards amounted to between $65,000 and $114,000 per person depending on the degree of suffering. Additional pay to the workers at leprosaria was preserved.