|JPRI Working Paper No. 30: February 1997
Deconstructing the Japanese HIV Scandal
by Eric A. Feldman
It has rapidly become the conventional
wisdom in both Japan and abroad--espoused by such ordinarily conservative
newspapers as Yomiuri Shimbun and the Wall Street Journal--that the distribution of HIV-contaminated blood in Japan is a tragic consequence of bureaucratic power, the effect of a Health and Welfare Ministry that is able to ignore the rule of law. Japanese hemophiliacs, almost half of whom are HIV-infected, are considered "innocent" victims of the ministry, in contrast to others with HIV who, it is implied, may not be so innocent, like sex workers and men who have sex with men.* The white knight of the drama is a politician, Naoto Kan, who as Minister of Health and Welfare humiliated the career bureaucrats in his ministry and prompted expectations of significant administrative reform. Like most conventional wisdom, there is some truth to this tale, but the scenario is actually far more complicated.
Despite the era of globalization that is supposedly upon us, an ideology of self-sufficiency dominates the thinking of most nations when it comes to their blood supply. Since 1970, Japan has collected enough whole blood domestically to be self-sufficient. Until the 1990s, however, Japan imported from the U.S. over 90% of the blood products used by hemophiliacs. Most blood product companies are multinationals, and information about technical and scientific aspects of blood safety is widely shared among an international community of experts. At the center of that web of commerce and information is the United States. To comprehend the conflict over HIV-tainted blood in Japan, it is therefore critical to understand the seminal events related to AIDS and blood that animated the behavior of the U.S. Federal Drug Administration (FDA) and the Centers for Disease Control (CDC).
In October, 1980, the first cases of what would later be called AIDS were
diagnosed in several gay men in Los Angeles. Almost two years later, in July,
1982, the U.S. CDC reported the first three cases of hemophiliacs with an
immune-suppressive disorder that resembled the AIDS cases that were being
discovered nationally. The CDC's publication, the Morbidity and Mortality Weekly Report (MMWR), stated at the time: "Although the cause of the severe immune dysfunction is unknown, the occurrence among the three hemophiliac cases suggests the possible transmission of an agent through blood products." By June, 1983, 16 hemophiliacs in the U.S. were identified as having AIDS; ten more were diagnosed by September.
Throughout the early 1980s, U.S. public health and blood officials, sometimes at public meetings, discussed whether or not AIDS was transmitted through blood, and what if anything should be done to protect the blood supply. The meetings were almost always contentious--the safety of the entire national blood supply was possibly at stake--and professionals disagreed as to what, if any, precautions should be taken. It is important to remember that at the time of those meetings no one knew the etiological agent responsible for AIDS. It was not until April, 1984, that the HIV-virus was isolated. The critical question--a question that remains in dispute--is at what point did a professional consensus develop that AIDS was transmitted through blood?
While the new and deadly disease was making headlines in the U.S., AIDS
caused little apparent concern in Japan, where the first case of AIDS was not
announced until March, 1985--a Japanese artist who had been living in New York.
But there is some evidence to suggest that the actual first case--a Japanese
hemophiliac who died from AIDS--was covered up two years earlier by a Ministry
of Health and Welfare advisory committee that did not want to cause alarm about
the Japanese blood system.** The belief that there was a cover-up, first voiced
in the 1980s, started a long chain of events now known as the scandal over yakugai AIDS (AIDS caused by medication).
In the summer of 1983, based on events internationally that raised concern about AIDS and blood, the Biologics and Antibiotics Division of the Japanese Ministry of Health and Welfare's Pharmaceutical Affairs Bureau organized an expert advisory group to examine Japanese blood policy. The head of the group was Dr. Takeshi Abe, the most respected expert on hemophilia in the country. Abe's group discussed the possibility that importing blood products into Japan from the U.S. could spread AIDS and explored alternatives to using those products. Yet after several meetings over a number of months, the group decided to continue importing U.S. blood products, and it did not issue warnings regarding the possible danger of those products. We know this because of recently released documents that detail the content of those meetings.
The documents also indicate that the committee decided not to press for the emergency import of heated blood products, which were available in limited quantities in the U.S. beginning in March, 1983. Blood products are the medication used by hemophiliacs to stop or prevent bleeding. Because they are manufactured from whole blood pooled from many, sometimes thousands, of donors, they are more likely to contain viruses than a single lot of whole blood. It was hoped that heating them would eliminate hepatitis and other blood-borne pathogens, such as the agent that was causing AIDS. The Japanese Ministry of Health and Welfare ordered a series of clinical trials on the safety and efficacy of heated products, carried out simultaneously by Japanese and foreign pharmaceutical companies, which delayed their introduction into the Japanese market until summer/fall l985.
Many questions have been raised about these 1983 AIDS Task Force meetings. Why did the committee fail to make heated blood products available more quickly? Why did it not sound a warning to the public, or at least to hemophiliacs, about the possible danger of the unheated products? None of the released documents provides satisfactory answers to these questions.
Attorneys for the hemophiliacs, and the Japanese media, have claimed that the ministry, in consultation with its expert advisory group, made these decisions because of its close links to Japanese pharmaceutical companies, and its desire to protect the interests of those companies. Although Baxter, the main U.S. firm importing blood products into Japan, sought rapid ministry approval of its heated products, the ministry delayed. No Japanese company had the technology to manufacture such products, and the companies had large stocks of unheated merchandise that they were inclined to sell rather than discard. If the ministry had moved quickly to approve the heated products, the domestic companies might have lost market share. Not surprisingly, the government officials later justified their actions by pointing to the lack of consensus among experts that AIDS was blood-borne, and to the inadequate scientific evidence demonstrating the safety and efficacy of heated blood products.
This is not an implausible scenario, but it is incomplete. First, those who
are looking for a revelatory document that makes clear why the ministry's AIDS
Task Force failed to act are searching in vain. The Wall Street Journal, for example, describes the committee's decisions as 'strange' and 'mysterious,' implying that some unknown and nefarious fact may explain them. But in reality the committee's actions are perfectly normal: essentially, it made no decision at all. The policy that was then in effect with regard to blood product importation continued, and the established procedure for clinical trials was followed. Explaining why no changes were made is easy-inertia and lack of change are what usually happen in administrative agencies.
Second, while it may be true that commercial interests drove the ministry's decisions regarding blood, Japan was by no means alone in its late approval of heated blood products. In England, heated products were not approved until about the same time as in Japan, and there too almost half of the nation's hemophiliacs are HIV-infected.
Third, it has been widely reported that the delay in approving heated products in Japan--more than eighteen months after the U.S.--caused the HIV infection of 40% of Japan's hemophiliacs. But that is not true. HIV-contaminated products were distributed from the late 1970s on, and thus many hemophiliacs were infected well before even the U.S. began heating blood products. Half of American hemophiliacs are also HIV-infected, and equal numbers are infected in most of Europe. It is impossible to say with certainty how many lives would have been saved if the Japanese government had acted more quickly. But even immediate and responsible action by the government would not have averted a tragedy. This is not a justification for the delay. But it is important to be clear about the consequences of the ministry's actions.
Japanese Hemophiliacs as an Outgroup
Of the approximately 5,000 hemophiliacs in Japan, 40%, or 2,000, are estimated to be HIV-positive. With fewer than 2,000 reported cases of AIDS in Japan, and less than 5,000 people who have tested HIV-positive, hemophiliacs thus represent a large proportion of those affected by the disease. Hemophiliacs in Japan bear not only the burden of high rates of HIV infection; they have also long suffered from the dual hardships of a genetic disease and the social prejudice resulting from that medical condition. According to Yasunori Akase, the first Japanese hemophiliac to reveal publicly that he had AIDS, "There exists a terrible discrimination against us among doctors and hospital authorities. They make a lot of excuses [to avoid treating those with HIV/AIDS at their hospitals], such as being short of facilities and staff."
Hemophiliacs have been excluded from schools and jobs. Teachers have demanded that hemophiliac children bring evidence to school that they are not HIV-positive. Classmates have taunted those with hemophilia, saying "You are an AIDS patient." Some employers have required adults to provide copies of HIV test results. Neighbors have shunned hemophiliacs whom they previously tolerated. A survey by the Friends of Hemophilia Society, Kyoto Chapter, found that hemophiliacs are routinely turned away by dentists, internists, surgeons, and pediatricians.
At a press conference to discuss proposed AIDS legislation in 1987, Hoei Omaha, spokesperson for the Liberal Democratic Party's AIDS Committee, made the following statement: "It is more important to prevent the spread of AIDS than to protect the privacy of high-risk groups. If we respect the human rights of one person, we are depriving ninety-nine others of their right to live."
An advocate for the hemophiliac community retorted: "If AIDS were not a sexually transmitted disease, but people could be infected through casual contact, and nine-nine people could unknowingly become infected, then that would have to be a consideration. But the facts are different."
Discrimination served as a unifying factor, leading hemophiliacs to turn inward. Special camps operate for children. Newsletters provide information about health and recreation. Organizations like the Friends of Hemophilia Society offer a friendly refuge from social prejudice. But when hemophiliacs perceived the medical and social threat of AIDS, they were ready to fight. Engaged in what they considered to be a high-stakes conflict with the state and large corporations, they adopted a rights-based strategy. In Japanese social conflict, rights claims can attract media attention, public sympathy, and additional members to grass-roots groups, thereby influencing the outcome of the conflict.
Even before AIDS legislation was announced in February, 1987, hemophilia
groups were on the offensive. One hemophiliac was quoted in the Asahi Shimbun: "We must decisively stop the process of making legislation that disregards the human rights of hemophiliacs infected through a misfortune with pharmaceuticals." But the legislative process was not to be derailed. On February 19, 1987, a Ministry of Health and Welfare draft law was distributed to the press. It included penalties for individuals with AIDS or HIV infection who engaged in unsafe sexual acts or donated blood; possible prison sentences for those who lied to medical authorities about HIV; fines for physicians who failed to report an AIDS diagnosis to the prefectural government; and mandatory reporting of the names of those with HIV/AIDS to prefectural health authorities.
Hemophilia groups quickly criticized the bill for failing to protect the right to privacy of AIDS sufferers. They also argued that it would bolster the general public prejudice and discrimination against those with genetic defects, especially hemophiliacs. Three weeks after the draft legislation, on March 6, 1987, the ministry submitted a new bill to the Social Affairs Subcommittee of the Liberal Democratic Party, which approved it the same day. Among its provisions were the following:
Physicians must report the age, sex, and route of infection of all patients infected with the AIDS virus to the prefectural governor within seven days.
If a physician deems that a patient is not following the physician's advice and may be infecting others, the doctor must report the name and address of the patient to the prefectural governor.
If a physician believes a non-patient has transmitted AIDS to a patient, the doctor can give the name and address of the non-patient to the prefectural governor.
Prefectural governors can recommend that people suspected of being carriers and infecting other people be tested for the virus, and require a test for individuals who do not voluntarily comply.
Hemophiliacs, again vocal critics, restated their earlier fears of rights violations. Juzo Matsuda, a professor of medicine at Teikyo University concurred: "I am afraid the legislation would be targeted 99.9 percent at hemophiliacs. In addition to the congenital handicap, they may even be ostracized from society." Citing, in addition, the possibility of hemophiliac children being denied their right to attend schools and being ostracized by other children, hemophiliac groups insisted that society react to AIDS with compassion and allow hemophiliacs to monitor themselves.
The AIDS Prevention Law, introduced in March 1987, was not discussed in the Diet until the end of 1988, a delay occasioned by the emergence of more urgent political issues, primarily Prime Minister Takeshita's controversial sales tax. During this hiatus, hemophiliacs continued to criticize the bill. Members of the Japanese Friends of Hemophilia Association insisted that the government accept complete responsibility for the importation and distribution of tainted blood and compensate HIV-positive hemophiliacs and the families of hemophiliacs who died of AIDS. Among other things, they demanded that the government pay for private hospital rooms, which some hospitals forced AIDS patients to occupy but which were not covered by health insurance.
When the AIDS Prevention Law was finally discussed in the Diet in 1988, one change made by the Health and Welfare Committee of the Lower House stood out as particularly significant. It read: "Cases of HIV-positive persons infected through blood products (hemophiliacs) do not have to be reported to the government." The exemption in part resulted from the relationship forged between hemophiliac groups and Dr. Ito, the ministry official largely responsible for writing the legislation. He was consulted by the Health and Welfare Committee during its hearings, and suggested changes in the proposed AIDS law to make it palatable to hemophilia groups but acceptable to the government.
However, exclusion from most of the provisions of the bill did not appease hemophiliacs. The bill failed to address their most pressing concerns: financial compensation, better medical care, and freedom from discrimination. Before the bill was passed, many HIV-positive hemophiliacs had received treatment at health care facilities where their identities became known and their HIV status was reported to prefectural health authorities. Invisibility was thus no longer a viable option. More significantly, hemophiliacs increasingly emphasized that the AIDS Prevention Law made no distinctions among individuals with AIDS, even though hemophiliacs were the 'innocent' victims of bad blood.
Persistent lobbying by the hemophilia associations helped to create a close
working relationship with ministry officials and others closely involved with
the AIDS bill. Although they must have known that they would be unable to
prevent the eventual passage of the legislation, hemophilia groups continued to
assert their right to compensation, hoping that if they attracted enough media
attention they could gain concessions from the government. In turn, the government
was searching for a way to partially satisfy, and thus silence, the group most
critical of the proposed law. What resulted was a system through which
hemophiliacs affected by AIDS would be given financial relief as a way to
lessen the sting if (or when) the AIDS bill became law, a method of compromise
called ame to muchi, or 'candy and a whip.'
In fact, the government had begun discussing the establishment of a fund for hemophiliacs in early 1987, after the hemophiliacs made it clear that they considered the government's lax blood policy responsible for the high HIV-positive rate they suffered. A memo written by the Minister of Health and Welfare for a 1987 Cabinet meeting contained a hint that the government would attempt to obtain financial contributions from pharmaceutical companies that were in part responsible for the importation of HIV-contaminated products. Several months later, on May 15, 1987, newspapers reported that the ministry had started "informal negotiations with AIDS patients who were infected with the disease through transfusions of imported blood over compensation and relief measures for the disease."
On April 16, 1988, the Ministry of Health and Welfare announced the
establishment of a relief scheme (HIV Kansen Higai Kyusai Seido) for hemophiliacs, to be implemented January 1, 1989. Though not revealing the exact source or magnitude of the fund, the money was gathered by the ministry's Biologics and Antibiotics Division, whose bureaucrats approached the companies selling imported blood products in Japan and persuaded them to contribute. This was not difficult, given the close working relationship between the ministry and the pharmaceutical industry, and the strong possibility of multiple and costly litigation if the companies did not pay willingly.
Almost before the ink was dry on the AIDS Prevention Law and the
compensation scheme, hemophiliacs also intensified their demands for an
official apology. They viewed financial relief as small consolation for having
been infected with HIV. They had tried unsuccessfully to have the government
admit its culpability in the distribution of tainted blood by insisting that
the ministry describe the payment scheme with the Japanese words isharyo
or hosho, implying an admission of fault and an apology, rather than kyusai, which lacks a moral dimension.
But the ministry refused, and hemophiliacs intensified their demands for an acknowledgment that their human rights had been abridged, and for an apology. And then they went to court, in two groups totalling almost two hundred plaintiffs, claiming that the Ministry of Health and Welfare, and pharmaceutical companies, had been negligent in distributing HIV-tainted blood. They demanded an apology and a large cash settlement.
On October 27, 1989, a group of HIV-positive hemophiliacs and family members
of hemophiliacs who had died of AIDS filed a lawsuit in the Tokyo District
Court. Over the next several years, additional plaintiffs were added, and a
similar case was presented to the Osaka District Court. Plaintiffs were
organized into several associations (HIV Sosho o Sasaeru Kai, for example) modeled on Japanese citizens' movements of the 1970s. These organizations published newsletters, held symposia, and appeared in the media at every opportunity.
The defendants were five pharmaceutical companies--Green Cross Corporation, Cutter Japan, Baxter Corporation, Bayer, and Nippon Zoki Pharmaceutical Corporation--as well as the Ministry of Health and Welfare. Conspicuously absent from the list of defendants was the Japanese Red Cross. This to some extent reflects the fact that the JRC had no active role in importing, distributing, or approving blood products used by hemophiliacs. The Japanese Red Cross collects and distributes whole blood in Japan, while blood products are under the control of the Green Cross and other pharmaceutical companies. Nonetheless, zealous plaintiffs would have had little difficulty in arguing that the JRC neglected its duty to insure a safe blood supply in Japan by failing to collect enough blood to manufacture blood products domestically. The problem is that the honorary chair of the JRC has since the Meiji period been a member of the Japanese royal family, which has bestowed a peculiar kind of sanctity on the organization. Attorneys, journalists, and government officials speak in hushed tones when discussing the JRC and its links to contaminated blood. In short, suing the JRC is taboo, and all parties to the conflict over HIV and blood have taken pains to avoid involving it in the controversy.
Defendants in the litigation, joined by a common human tragedy, had deeply divided interests. There were tensions between foreign and domestic pharmaceutical companies; between the pharmaceutical companies and the Ministry of Health and Welfare; and between companies that had heat-treated blood products available at different times. Some tensions were a consequence of the funding of the compensation scheme for hemophiliacs. While the ministry had obtained financial donations from the five pharmaceutical company defendants, the government itself had made no fiscal contribution. Instead, it considered the administration of compensation claims and payments as an in-kind contribution that obviated the need for government financing. Pharmaceutical companies, which blamed the government for delaying clinical trials and causing the spread of HIV among hemophiliacs, considered the government's response self-serving and unfair.
The institutional framework of litigation in Japan, particularly the protracted court process, made it unlikely that the 1989 HIV lawsuits would be settled in less than a decade. As the legal process continued, strains and tensions began to take a toll. Bickering between the Osaka and Tokyo plaintiffs over strategy and goals threatened to undermine the solidarity of the litigants. Many plaintiffs who were HIV-positive could not endure a lengthy lawsuit, and almost one-third of the original plaintiffs had died by 1995. Arguments in the Tokyo and Osaka District Courts ended in May and July, 1995; decisions were expected six months later. There was little doubt that whatever opinions the courts issued, there would be immediate appeals.
As the Tokyo District Court judges prepared their opinion, the activities of the plaintiffs' support group escalated. One year earlier, at the Tenth International Conference of AIDS in Yokohama, they had organized a demonstration and satellite meeting to publicize the case of Japanese hemophiliacs. Over one thousand people had participated, and membership in the organization had ballooned. From several hundred in the early 1990s, the HIV Litigation Support Group could boast 4,000 members by 1996. Borrowing from the successful tactics of Japanese citizens' movements of the 1970s, they held sit-ins and rallies at the Ministry of Health and Welfare.
The ministry made no comment; but shifts in national politics, brought about by the Liberal Democratic Party's 1993 loss of a majority of seats in the Diet for the first time in over three decades, suddenly became a factor in the bad blood controversy. Until 1995, the government had maintained a hard line, saying that compromise was impossible because it was not responsible for the HIV infection of hemophiliacs. The entire HIV-tainted blood episode took place during the rule of the LDP, and politicians from that party were predictably wary of accepting responsibility for it. But that position softened when a new Health and Welfare Minister, Churyo Mori, was appointed in August, 1995, by Prime Minister Murayama of the Social Democratic Party (SDP), formerly the Socialist Party.
Mori wasted little time in announcing that he would consider a compromise solution to the litigation if it were recommended by the courts. Capitalizing on Mori's statement, plaintiffs filed a petition with the Tokyo District Court demanding that if the court were to suggest a settlement, it should contain an acknowledgment that the ministry and pharmaceutical companies were legally responsible, and that it should urge them to apologize. Soon after, in October, 1995, what had appeared to be a typically lengthy legal battle took a turn. The Tokyo and Osaka courts jointly recommended an out-of-court settlement in which each plaintiff would receive 45 million yen (approximately $450,000 in 1996), with payment divided 60/40 between the pharmaceutical companies and the government. The court justified its urging of a settlement by declaring its sympathy for infected hemophiliacs. As victims of discrimination, unable to receive care for HIV infections, fearful of disclosing their names and addresses, hemophiliacs were dying from a tragedy for which they bore no responsibility. Conversely, under the Pharmaceutical Affairs Law, the Ministry of Health and Welfare was responsible for protecting Japanese citizens from drug side-effects, and the manufacturers of pharmaceuticals had the responsibility to sell safe products.
The Green Cross Corporation's response, issued through its public relations department, seemed calculated to further provoke the plaintiffs. "We feel pity for the patients rather than being sorry for them," it read. "Pity is the only word we can say at this point of [sic] time." Baxter then indicated that it did not intend to enter into settlement negotiations until the court clarified why the government was asked to pay only 40% of the costs, whether there was an upper limit on total settlement payments, and what would happen to the funding of the earlier ministry-administered compensation scheme. Minister Mori, in keeping with his August announcement, stated: "We would like to sincerely apologize to the families of those who have died and those still fighting the disease. We cannot deny that delayed government measures led to the tragic increase of victims."
But Mori went on to say that the ministry had tried to prevent the disaster but had been limited by the available medical evidence in the early 1980s. Having pressed the defendants for years to make a clear and unambiguous moral and legal apology, hemophiliac plaintiffs were not appeased by Mori's statement. Attorneys for the plaintiffs announced that they would enter into settlement negotiations but were not satisfied with the court's recommendations. They demanded 60 million yen for each plaintiff ($600,000) and a sincere apology from all defendants. Mori's apology, which suggested that the ministry was itself a victim of inadequate information, was unacceptable to them.
It did not take long for each defendant to agree to participate in settlement negotiations. While the court had not rendered a specific opinion on the plaintiff's negligence claim, the language of the court's proposal made clear its substantial agreement with the plaintiffs' position. Refusing to negotiate would have been unthinkable. Neither the plaintiffs, the defendants, nor the court, however, could have anticipated the political developments that pushed the HIV-contaminated blood litigation into its final phase.
Blood, Bureaucracy, and the Political Process
Prime Minister Murayama's tenure lasted longer than expected, but from its
beginning political observers predicted that his rule would be short-lived.
Those predictions were borne out when Murayama resigned on January 5, 1996, and
his successor, former Minister of Finance Ryutaro Hashimoto took control.
Lacking a majority of seats in the lower house of the Diet, Hashimoto's Liberal
Democratic Party was unable to form a single-party government and consequently
had to rely on a coalition of three parties: the LDP, former Prime Minister
Murayama's Social Democratic Party, and a recently formed party called New
Sakigake was by far the smallest of the coalition partners. But it was credited with having brokered the political compromise among the parties that allowed Hashimoto to become prime minister, and its participation in the coalition would have to be rewarded. The form of the reward was not in question--appointment of a Sakigake member as the head of a ministry--but which ministry was not decided. As Hashimoto confirmed the cabinet, his first choice for leading the Ministry of Health and Welfare unexpectedly pressed for a different appointment, and the post of Minister of Health and Welfare became available. A political opportunity for some, a peril for others; Sakigake's Naoto Kan stepped forward.
Kan entered politics in the 1970s by working on the campaign of Fusae
Ichikawa, one of the first women to serve in the Diet. During his student days
at the Tokyo Institute of Technology, he was active in the anti-Vietnam War
protests, and he carried the image of an outside reformer into his political
career with the publication of his book, A Citizen Guerrilla Challenges the Parliament. Kan's affiliation with the Social Democratic Union, a small splinter group, ended in 1994, when he joined Sakigake.
Within weeks of taking control of the ministry, Kan transformed the conflict over contaminated blood. No longer was it hemophiliac plaintiffs against the Ministry of Health and Welfare and pharmaceutical companies. Health and Welfare Minister Kan turned against the corps of career bureaucrats in his ministry and elevated the dispute over HIV-tainted blood into one of the most publicized scandals of the 1990s. Kan accused ministry bureaucrats of withholding information about the 1983 meetings, and ordered his staff to produce the files describing those meetings. Once the documents were found (those at the ministry had long maintained that they couldn't find them), Kan said that they indicated the ministry was responsible for the distribution of contaminated blood, and he publicly apologized to hemophiliacs.
In addition, Kan made it clear that he was eager to participate in the out-of-court settlement of the litigation brought by hemophiliacs, and he pressured the pharmaceutical companies to join in the settlement. After several months of negotiation, an agreement was reached. In March 1996, it was announced that the plaintiffs would receive $450,000 each (by comparison, pharmaceutical corporations in the U.S. have been pushing for a settlement that would pay about a quarter of that to infected hemophiliacs), and heads of all the defendant pharmaceutical companies would offer public apologies. The stunning image of the president of the Green Cross Corporation, Japan's largest pharmaceutical company, on his hands and knees, forehead touching the floor, remains the emotional climax of the conflict.
One might reasonably have expected the drama over tainted blood to have ended with the settlement, but it did not. During the past year, the Office of the Prosecutor in Tokyo has launched a major criminal investigation. Dr. Abe, the head of the ministry's advisory group on blood policy, was arrested and charged with criminal negligence, and is now out of jail on ¥100 million bail. The current president and two former presidents of the Green Cross have also been arrested, as has a former director of the Biologics and Antibiotics Division of the ministry.
In contrast, Minister Kan rode a wave of good press reports that, according to a recent survey, made him one of the most popular public figures in the country. He was heralded for acting in the public's interest and forcing reform on a callous, overly-powerful, and corrupt ministry. After a series of hearings in the Diet, Kan ordered the reorganization of several branches of the ministry. He oversaw the dissolution of the Pharmaceutical Affairs Bureau and reprimanded top ministry officials. But Kan's actions did not endear him to everyone, and in Prime Minister Hashimoto's new cabinet (appointed in November, 1996) Kan was nowhere to be found.
I would like to believe the reports of fundamental reform at the Ministry of Health and Welfare. And I would be happy to give Mr. Kan credit for bringing them about. But I am not confident that the supposed reform we are witnessing is particularly significant and not sure to what extent Mr. Kan's actions are enduring. It is entertaining but not always illuminating to try and guess what motivates the actions of individuals, especially individual politicians. Perhaps it is true that Mr. Kan behaved as he did because he is sympathetic to the unempowered. Maybe he did allow his background as a member of citizens' movements to guide his actions as Minister of Health and Welfare. But there is also evidence to support a more skeptical view.
Kan's party, Sakigake, as part of its involvement in the ruling coalition, was promised a cabinet position. That position was not supposed to involve the Ministry of Health and Welfare, but an unexpected series of events, combined with Mr. Kan's active lobbying for the post, won him the job. Mr. Kan was surely aware that as minister he would become a central character in the HIV/blood drama. As an outsider to the LDP, this presented him with a special opportunity. He could use the HIV/blood issue for his own political gain while maintaining the posture of a radical outsider. The HIV-positive hemophiliacs were sympathetic plaintiffs, with thousands of supporters who were organizing sit-ins and making good use of the media. The source of the bad blood products was the U.S., which made it natural to blame the contamination on impure foreign sources that infected innocent Japanese. The ministry bureaucrats were an easy target: as in many other places, in Japan physicians and medical authority in general engender great distrust.
Yet the ministry, despite Kan's attacks and the media pile-on, did not wither under the strain. It "found" and released long-hidden documents, but very few, and very slowly, and very selectively. Just three days after the out-of-court settlement was signed, 27 files relating to the 1983 AIDS Task Force meetings that were not previously acknowledged were released by the ministry. Minister Kan announced that the documents had been located two months earlier but were never shown to him.
Many of the documents released by the ministry have reinforced an impression that the ministry is anxious to perpetuate--that particular individuals are responsible for doing bad things and should be punished. Dr. Abe, the Task Force chair, has been consistently vilified; so have Drs. Gunji and Matsumura, both former directors of the Division of Biologics and Antibiotics. But whatever the truth of the accusations against these individuals, their prominence in the conflict has served to highlight individual rather than institutional pathologies.
Some attempts at institutional reform have been made, but they have not been terribly meaningful. Those charged with drafting recommendations for administrative change at the health ministry--reform advertised as creating a structure that would minimize the likelihood of future blood-borne pathogens--had no particular expertise in or knowledge of blood policy. They treated their task as crafting a policy that mimicked the responses of other countries to their HIV-tainted blood episodes, and that would therefore play well in the media; but they did not demonstrate concern with addressing the specific problems that arose in Japan. So far, while parts of the ministry have been abolished or renamed, there has been no significant change in personnel and no sign that the internal workings of the ministry have been altered.
One issue that has recently surfaced in Japan is what the media have dubbed "fourth route" HIV infections. Along with unprotected sex, mother-to-fetus, and hemophilia-related routes of HIV transmission, infection through whole blood and blood products administered as part of medical treatment or surgery in Japan has claimed its own epidemiological category. In mid-1995, seventeen such fourth-route victims were identified, and four of them had been infected by whole blood collected domestically, presumably before November, 1986, when donated blood in Japan started to be screened. A questionnaire to hospitals subsequently revealed that 91 of them had used unheated blood products to treat far more patients than was previously believed. One was a woman treated after ovarian surgery. She promptly sued the government and pharmaceutical companies for ¥145 million ($1.45 million). Others have yet to be identified. As a Ministry of Health and Welfare committee continued to investigate fourth-route infections in the spring of 1996, 1,200 hospitals were identified as having used imported, unheated blood products. For the first time, the ministry discussed identifying and notifying the consumers of such products and implementing measures to limit further transmission from those unknowingly infected.
One striking result of the HIV scandal is that blood policy in Japan has turned inward. The government is determined to make self-sufficiency of blood products a policy priority. Had only Japanese blood been used, instead of purchasing impure American products, it is believed that the entire spectacle of conflict over the body's most precious resource would have been avoided. Japanese folk beliefs consider blood the template of identity. A, B, AB, and O are not simply biological indicators; they describe the character of different types of individuals. Families also have identities, captured in the concept of bloodlines. More social than biological, bloodlines are created through patterns of marriage and procreation. Like individual blood types and family bloodlines, the blood of the Japanese state is also a symbol of identity, in this case national identity. Conflict over contaminated blood was prolonged and bitter, but there was never disagreement that foreign blood, not Japanese bureaucrats, or politicians, or corporations, or physicians, was the true villain.
I have provided a rather gray picture of the HIV-tainted blood problem in Japan. In this account, the ministry everyone loves to hate these days--the Ministry of Health and Welfare--acted inappropriately, maybe even criminally, but the consequences of those actions are far less significant than is widely believed. Minister Kan is as venal as he is heroic. The victims, hemophiliacs, are no more victimized in Japan--at least not much more--than they are in most other places. And the lessons, or institutional consequences, of the distribution of HIV-contaminated blood are minimal. I wish it were not so--maybe it is too early to pronounce such judgments--but for now the facts stand in the way of a more encouraging conclusion.
*Hemophilia is a genetic disorder carried on the 'x' chromosome; hence females are 'carriers' of the gene but the disease is fully manifest only in males, where the 'y' chromosome does not protect, or mask, the gene. For a female to have hemophilia, she would have to be the daughter of a male hemophiliac and a female carrier of the gene, an extremely rare occurrence.
**See JPRI Working Paper No. 23 (August 1996), Masao Miyamoto, Mental Castration, the HIV Scandal, and the Japanese Bureaucracy.
PROFESSOR ERIC A. FELDMAN holds J.D. and Ph.D. degrees from the
University of California, Berkeley, and is a member of the California Bar. He
has written extensively on medical ethics, law, and health policy in Japan,
including "Japan: AIDS as a 'Non-issue,'" in David Kirp and Ronald
Bayer, eds., AIDS in the Industrializing Democracies (Rutgers, 1992);
and "Legal Transplants, Organ Transplants: The Japanese Experience," Social and Legal Studies, vol. 3 (1994). He is currently Associate Director of the Institute for Law and Society of New York University. This paper, part of a longer article that will soon be published, was written for an international comparative project he is codirecting on conflicts over HIV-tainted blood.