This study demonstrates that the isolation of leprosy patients was introduced and made rigorous in both countries around the time when it became known that the disease was contagious. Patient isolation policies and leprosaria were maintained long after it became known that isolation is not necessary in the majority of cases. Remarkable was the stagnation of policy change in the post-war period. The preservation of the isolation policy provided patients with some social support, but continuously deprived them of their civil liberties. Furthermore, the policy as an authoritative statement on the disease may have fostered the social stigma associated with a belief that the disease is a dreadful contagion, thereby maintaining a hurdle to patients' reintegration into society. Evidently, the policy's abolition was not easily accomplished nor was achieved solely by advances in scientific knowledge.
Garbage Can model of policy making
Kingdon's Garbage Can model is very useful in understanding the failure of 'appropriate' policy termination, as well as its delayed termination, observed in both countries: Any policy has an inertia and efforts to abolish the patient isolation policy did not bear fruit until three streams, i.e., problem, policy, and politics, converged after the mid-1980s. Science, although presumably a potent factor, was not in itself a major driving force in opening a policy window.
In the early post-WWII period (late 1940s through 1950s) both in the US and Japan, scientific developments such as learning that the infectiousness of leprosy is usually feeble and uneven across disease types and the development of sulfone drugs effective against the disease might have been expected to be the major factor in reconsideration of the traditional isolation and institutional policy for leprosy management. In reality, however, the laws were revised, not as a result of the scientific developments, but as a spillover from other policy agendas: the enactment of the Public Health Services Act in the US, and the revision of social security systems in Japan, without substantial policy changes. Once legislated, they could hardly be challenged.
Most actors then participating in the policy discussion were well aware of the new drugs, and patients were anxious to reap the fruits of these drugs and achieve the restoration of their civil liberties, sometimes participating in political mobilization for law revision. Scientific and medical advances could have altered the face of issues in the problem stream, helped generate alternative methods of disease management in the policy stream, and changed the opinion of the public and experts in the political stream. However, many influential experts, who had been engaged in the establishment and/or expansion of leprosaria were determined to keep the policy and the institutions and played on remaining public fear of leprosy[100
]. Those conservative "elites", primarily bureaucratic agency representatives in the US and medical professionals in Japan, manifested opposition to the proposed law revision, and their arguments were not critically reviewed and more or less accepted by the other actors. Consequently, science and medicine were unable to play a major role in changing the political environment. For these reasons, a valuable opportunity for legislative change was lost in this period when patients were still young and had not become so dependent on their sanatoria in both countries.
After the unsuccessful exploitation of these incomplete policy windows, the three streams of problems, policies and politics did not converge for several decades. By the late 1960s, it could be said that a near consensus had developed in the research community that isolation was an unreasonable solution. Moreover, the infringement of civil liberties was perceived to be a problem, a perception which increased in importance as academics and international health communities repeatedly recommended the abolition of isolation policy as scientifically unjustifiable.
In the problem stream, focusing events were created by patients, administrators and medical professionals with the goal of encouraging the public and politicians to put the issue on the agenda. Most obviously, patients published periodicals, invited media persons to their meetings, petitioned bureaucracies, and lobbied legislators in both countries. In Japan, patients even conducted sit-ins around the Diet and the Ministerial buildings. The repeated recommendations of international organizations, and the occasional official reports recommending outsourcing and outpatient services, also served as focuses. In the political stream, there were some changes as well. As the public's fear of leprosy dwindled (or at least became latent as they forget about the disease), so did the associated stigma. Improved public attitudes toward the disease meant that the political climate was more favorable to returning the patients to society, terminating the isolation policy, and abolishing leprosaria. In both countries, there were periodic turnovers of leprosaria directors, sometimes recruited from outside the leprosaria. The appointment of leprosaria directors from other public hospitals and academic institutions, who had the intention to discharge the long-term residents, certainly could have opened a window.
Every time the issue reached the agenda, however, the proposed policy alternatives raised concerns among patients. Treating leprosy as an ordinary disease and integrating treatment into general medical care and public health measures threatened the 'special' status of leprosy. Many patients, who had become dependent on the leprosaria, feared losing their homes and privileges. If from a scientific perspective the disease no longer required isolation, patients sought to justify their continued privileges either as government duty to provide disease victims with compassionate care or as government compensation for past erroneous policies. Such patients' claims were not easily accepted. Given the lack of a public consensus on the moral underpinnings for patient support, the belief that long-term residents are entitled to generous government "compensation" was a hurdle. To surmount that hurdle, administrators and medical professionals would have had to acknowledge their wrongdoing and determine when the isolation policy could and should have been judged as obsolete. Additionally, public opinion, and of course the views of elected officials, would have needed to be nurtured to recognize and sympathize with patients' adversaries, allowing for generous government payments. As a result, the position of the patients was not really unified, and therefore they could not fully mobilize themselves politically. Consequently, this policy community more or less shared the view that the patients' disadvantages caused by the law were a necessary cost of its even greater benefits, namely the continuation of leprosaria[101
When it proved impossible to accomplish decisive legislative changes, straightforward efforts to discharge long-term and medically unwarranted residents were also reduced. Instead policy adjustments were made by incremental administrative actions. Slow, limited and sometimes informal efforts were made for patients' discharge and for the provision of outpatient services. As one might expect[102
], these disjointed and informal increments of change had limited success in modifying the policy's original effect. Since the policy under the existing law was administered on the premise that leprosy requires confinement and special care, it was limited in its capacity to compel patients to leave the leprosaria. As many patients chose to remain in their leprosaria, isolation ostensibly continued in the form of long-term residential care. In this way, the main focus of leprosy prevention policy gradually changed from social protection and patient care to the mere provision of residential places for patients and ex-patients (and later, rehabilitative services). These bureaucratic satisficing behaviors, as reported in other cases[104
], could not raise again the fundamental question of law revision, and as a consequence many engaged themselves in pork barrel politics to preserve and improve life in the leprosaria. For many years, policy (change) focused on discrete, short-term outputs rather than broader, long-range outcomes[106
In the 1980s, broad policy revision became possible again though the agendas were set by factors again other than science, specifically the discussion on economic inefficiency in the US and the issue of human rights violation in Japan. In the former, large government expenditure was a big social and political issue, and there was an active search for potentials for spending cuts. In the latter, AIDS as a source of social stigmas and the forced institutionalization of psychiatric patients were both prominent in the media, calling for the protection of the human rights of the diseased. Furthermore, as Bardach suggested[107
], increased political competition and Cabinet turnover at that time may also have increased the likelihood that elected officials would take up potential social issues to be remedied. In the US, Representatives Baker and Field fought for a House seat, while in Japan the two major parties competed vigorously for government office.
An indispensable key to policy change was the development of policy alternatives. Interestingly, they were quite common in both countries. Evidently, policy change occurred only after the leprosaria were recognized as legitimate homes for some patients and outpatient services were officially established. Patients were assured of their residences, but had the option of leaving the institutions. The patient's privilege of remaining in a leprosarium was then justified as partial compensation for the past compulsory segregation. In both countries, hazard duty payments were also maintained for ongoing employees, who could have otherwise opposed to policy changes. The primary difference, as reflective of the key arguments against the old policy, i.e., economic inefficiency and human rights violation, was that in Japan a public apology was offered by the government for its long-term negligence, though the apology was later used by the patients to win further government compensation through lawsuits. Another point is that in the US, large stipends were awarded to patients as an economic incentive to reduce the number of institutional residents.
The functions of science and scientists in the policy process
From the perspective of the Garbage Can model, problems, policies and politics typically evolve in separate, unconnected streams. When science is considered as a fourth factor, it is seen to influence all the streams, changing perception of problems, helping develop policies, and transforming political environments[108
]. Thus, science can be seen as approving or disapproving certain (existing) policies. However, it does not automatically create those effects by itself, nor in a political vacuum. Even when science indicates that an existing policy is no longer relevant, as this case study shows, people may make objections to its abolition for a variety of other reasons. In comparison with basic research, furthermore, applied research, including public health and epidemiological research, is more likely to follow an agenda driven by forces other than science[109
]. This means that the imminence of an issue, or its agenda status, can affect the production and use of scientific knowledge.
Furthermore, scientific disputes will not be always resolved during the time the scientific issues are considered relevant to policy discussions[110
]. Looking back at Period I, Promin was first mentioned in Leprosy Review in 1945, but it was not until 1952 that sulfone therapy became accepted among academics[111
]. Controversy on the effectiveness of sulfone drugs certainly still lingered at the time when the legislative changes were on the agenda, namely, around the time of the enactment of the Public Health Services Act and subsequent policy proposals in the US and at the time of the revision of Leprosy Prevention Law in Japan. The development and acceptance of scientific knowledge might have been slowed by the attitudes of authoritative and powerful experts in Japan. Also, in the US, quite a few experts continued to justify the isolation of infectious cases for many years. Arguments that did not support their convictions were sometimes screened out by disqualifying them. Authoritative positions of medical and administrative elites in society also hindered the public's critical appraisal of their arguments, as did the importance then attached to public health[113
]. The strength of the conservatives' arguments possibly came also from the systemic bias in their position as defenders of status quo: they had to simply attack a proposer's case as insufficient[114
In an adversarial process of rule-making, knowledge claims are sometimes deconstructed, exposing areas of weakness or uncertainty. These revealed weaknesses provide justification for political decision makers to assert that they have a right to engage in interpreting science, especially in areas that are controversial. Again, uncertainty within science itself is also a subject for negotiation, decision, and argument in policy process, since the quality and amount of knowledge are the objects of social negotiation[115
]. This partial transfer of cognitive authority to the legal and political arena may be seen as the way of assuring that the interpretation of (indeterminate) facts reflects the public values embodied in the legislation as well as the norms of the scientific community[116
]. The connections between given scientific data, expert interpretation of these data and policy content are like chains of linked arguments and beliefs[117
]. This process might be termed co-evolution or the process of mutual validation between policy and science[118
]. In a case where science and policy are co-constructed through processes which occur in tandem, it becomes difficult to explain the one by using the other[119
]. From the vantage point of history, the very absence or scarcity of critical review among legislators and the public in reviewing scientists' statements on the risk of disease spread might reflect and indicate their own fear of the disease and indifference to patients' human rights. When scientific knowledge is used in policy development, scientists and/or policymakers may choose to err either on the side of public safety or on that of patients' liberty and dignity.
For a long portion of Period II, incomplete knowledge was not necessarily the primary reason why science did not play a major role. Scientists, experts and legislators could have acted strategically as policy entrepreneurs to take advantage of occasional opportunities, provided by several focusing events, to open the windows of opportunity. In other words, scientific opposition, or dissensus if any, was not a major hindrance to their actions. Scientists, however, preferred not to encroach upon policy debates in an official and overt fashion, thus avoiding direct questions about justification and continuation of the institutions. In both countries during the 1960s and 1970s, there was a near consensus, albeit implicit among the interested parties, including scientists, physicians, bureaucrats, patients and politicians, that the leprosaria should be preserved or at least not immediately abolished. Though scientific assessment appeared conclusive and potent enough if effectively presented, consideration for the possible negative consequences of policy outcomes constrained its use. In the resultant incremental decision making, the demand for science was minimal.
Later in period III, when development of policy alternatives was definitely the key to changing policies, the process was not fueled by (new) scientific knowledge or discussion, but rather propelled by political skills which crafted both the policies and the favorable environments. A scientific consensus had already existed before the issue was taken up at this point, which illustrates the secondary importance of science in the emergence of policy windows. At most, the known arguments were reiterated and pushed to the fore. Policy change was not really contested and disputed in terms of science, simply because it did not have to be once attractive policy alternatives were proposed.
From this vantage in all the periods, science remained instrumental in the sense that scientific rationality was not the primary objective for which policy change was discussed or intended, and in the sense that scientific arguments were not the principal driving force for policy change. To review the course of events: Some initiating event, not directly associated science, leads to a policy issue that must be decided on; a debate ensues on the possible policy options and on possible scientific views of the issue; a scientific assessment of the policy issue yields a rationale for a policy choice[120
]. Thus, science is used either to legitimate policies developed for nonscientific reasons or is ignored if the consensus contradicts policy or there is scientific "dissensus." To the extent which science can be regarded as instrumental, namely that final policy decision was rendered to lawmakers, the role and responsibility of science could decrease[122
]. The scientific base and the political will to translate it to policy are ingredients necessary to induce policy changes[123
]. Inertia and/or political considerations certainly exerted huge influence[126
Policy entrepreneurs and leadership
Although many contextual conditions could facilitate changes in health policies, they do not in themselves activate actions by either legislators or administrators[127
]. As is the case with policy adoption[130
], successful termination might need a political leader, a terminator, to trigger and manage effectively the process of policy termination. He must cultivate support from both influential interest groups and from the general public and choose the arena for policy discussions[132
]. Then, a person skilled in policy termination should get the termination on the agenda, orchestrate advocacy coalitions, negate the survival tactics of anti-termination coalitions, and manage the administrative details[135
]. With respect to HD policy, for a long period, intellectual reluctance, the tendency to institutional permanence, dynamic conservatism, efficacious anti-termination coalitions, and legal obstacles certainly posed difficulties for policy changes in both countries[139
]. After a set of these contextual conditions were met, however, entrepreneurs had to accomplish their tasks. A crucial step for policy termination, namely the translation of ideas into action by coupling concrete and acceptable policy proposals with problem situations and political opportunities, was accomplished by a policy termination expert[141
When things proceed as the Garbage Can model suggests, policy change requires a good luck and/or a skillful policy entrepreneur, who can induce the convergence of streams and open the windows of opportunity. This study highlighted an essential role assumed by a skillful terminator, Baker in the US and Otani in Japan. In the US, Representative Baker, along with the PHS officials, held meetings with the patients and staffs at the institution so that all interested parties could reach agreement on his proposals. The PHS publicized its own review of the institution and its activities highlighting their economic inefficiency. In this way, Baker and the PHS maneuvered the political process to successful legislation enactment. In Japan, Otani dramatized the evils of the old policy, stressing the benefits of termination, while mollifying the worried patients by reassuring of their continued residence in the sanatoria. He thus successfully engineered a consensus among key interest groups, publicizing a thorough justification for termination and devising an acceptable plan. Through political leadership and skill, the issue was finally brought to the forefront, alternatives supplied, obstacles cleared, and the policy abolished. Both Baker and Otani conducted a series of bandwagon activities making effective use of the media.