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Will we be able to overcome the negative legacy of "discrimination, dissimulation and neglect"?

A history of the fight against HIV/AIDS in Japan :
An overview of 25 years

The fight against HIV/AIDS has its history particular to each part of the world. Japan too, has its own history of HIV/AIDS, defined by the country's sociological and historical context. It may not be internationally acknowledged, but it is a dynamic one nevertheless, influenced by intense public involvement, several incidents, and many contradictions.

The complete account cannot be stated here, however, the most significant/ important issues are be described below.

1. 1980s: Discrimination, dissimulation and nonfeasance

The history of HIV/AIDS epidemic in Japan in the 80s can be encapsulated in three words; "discrimination", "dissimulation" and "nonfeasance".

The official announcement of "the first AIDS patient in Japan" was made by the Ministry of Health and Welfare (MHW) in 1985. In reality, by 1984, the Ministry of Health and Welfare as well as the medical scientist/researchers involved in the administration of blood and blood products were already aware of the fact that many hemophiliacs had been infected by human immunodeficiency virus (HIV) through the use of HIV-contaminated unheated blood products. In the U.S., for example, the potential dangers of HIV infection through unheated blood products had been identified as early as 1983. Despite their knowledge of this fact, Green Cross Corporation, then largest supplier of blood products in the country, and the MHW left many hemophiliacs to be exposed to the risk of HIV infection due to their nonfeasance. The Japanese gay resident of San Francisco who occasionally visited in Japan at that time was announced as "the first AIDS patient" with the aim to dissimulate their fault.

In the late 1980s, discrimination takes its turn to overshadow the history of HIV/AIDS in Japan. Outbursts of public panic and discriminatory incidents against "HIV-positives" erupted consecutively in Matsumoto (a city of central Japan), Kobe (a city near Osaka) and Kochi (a city in South-Western Japan). Furthermore, the debate on the formulation of the "Law Concerning the Prevention of Acquired Immunodeficiency Syndrome (AIDS Prevention Law)" heightened in the Diet, on the pretext "that it is more important to prevent the spread of AIDS than to protect the privacy of high-risk groups". Eventually, the law was enacted in 1989.

Meanwhile in Osaka and Tokyo, hemophiliacs infected through the use of HIV-contaminated blood products filed lawsuit against Green Cross Corporation and the MHW, initiating the "HIV tainted blood litigation". However, both the Ministry and the pharmaceutical companies refused to admit their responsibility for the spread of HIV infection and the resulting damage.   Moreover, since the mid 80s, gradual development of small-scale preventive education and awareness-raising activities were seen within the gay community, which had long been socially ostracized and stigmatized in Japan.

 2. Towards 10th International AIDS Conference, Yokohama: A paradigm shift

It was in the 1990s, when HIV/AIDS-related history, laden with discrimination, dissimulation and nonfeasance, was seen to gradually alter its course. Cultural aspects of social activism lead by the people living with HIV/AIDS (PLWA) e.g. the Red Ribbon Campaign and the Memorial Quilt Project, were introduced from the Western countries and were slowly adopted within Japan. Furthermore, a growing recognition of the provisions in the "AIDS Prevention Law" being outdated, brought about administrative changes resulting in the effective nullification of the "control-oriented" articles of the Law, such as the enforcement of "watch and control" or the entry restriction for HIV-positive people. Meanwhile, the litigation protracted with the government insisting on denying all responsibility in the issue of HIV-tainted blood products.  

The 10th International AIDS Conference, held in Yokohama (1994), became a major turning point in diverting the trend in Japan "from discrimination/exclusion to coexistence". It was the first time the International AIDS Conference was held in Asia, and many non-governmental organizations (NGO) which addressed HIV/AIDS issues were created in Japan in preparation for this conference. Through intense efforts, the organizers managed to overcome the barriers of the "AIDS Prevention Law" and the immigration regulations, and lead the conference to a success.  This seemed to prove that a new chapter had been opened in the history of Japan's fight against HIV/AIDS. In reality however, it is not until several years later that the legal, medical and the social security structure would be modified.

 3. The victory in the "HIV tainted blood litigation": Changes in the medical and social security policy

In 1996, a settlement agreement was finally reached and the government admitted the administrative responsibility it had in the HIV-tainted blood controversy. It was an outcome to be "expected". Yet it deserves some reflection on the cost the plaintiffs had to pay, the efforts and the sacrifices made, for them to finally win this "expected outcome".

This settlement agreement brought about major changes in the medical and social security policy. Included in the terms of settlement were obligations to "provide the latest and the highest quality of medical care and treatment". The AIDS Clinical Center (ACC) was established within the International Medical Center of Japan (IMCJ), AIDS Care Core Hospitals system with their regional block headquarters was developed, and early access to new medication was made possible as the result of the settlement agreement. Moreover, the application of the Law for the Welfare of People with Physical Disabilities came as a large leap forward in securing access to affordable HIV/AIDS treatment for all PLWAs.

4. Formulation of the National Guidelines for HIV/AIDS Prevention and Care - then and now: The unremitting torment

In 1999, the Law Concerning the Prevention of Infectious Diseases and Patients with Infectious Diseases was enacted, abolishing the AIDS Prevention Law. Under this new law, HIV/AIDS was classified as "infectious disease Type IV". In the same year, the Ministry of Health, Labour and Welfare (MHLW) formulated the National Guideline for HIV/AIDS Prevention and Care. Four PLWAs participated in the development process of the Guideline. The Guideline proved to be highly progressive, and included measures for: the respect for human rights of PLWA and targeted groups (communities at risk of HIV infection), the implementation of appropriate prevention strategies, the reinforcement of ties with related institutions and agencies, the implementation of monitoring and evaluation with the participation of various stakeholders.

With this Guideline in place, the negative legacy from the 1980s appeared to have been virtually destroyed. However, one legacy persisted - "nonfeasance". In effect, most of the measures articulated in the Guideline have not been implemented for over six years. In terms of the targeted groups, formulation/implementation of measures has been insufficient in recent years, except for some projects in operation targeting the gay community. Inter-ministerial partnership remains a mere formality. As for the establishment of monitoring and evaluation system, almost nothing has begun.

Since the year 2000, the framework for the global fight against HIV/AIDS has greatly progressed.

Based on the "Declaration of Commitment on HIV/AIDS" adopted at the United Nations General Assembly Special Session on HIV/AIDS in 2001, the establishment of National HIV/AIDS Commission and multi-ministerial/-sectoral partnership became the norm in many countries including developing countries. Large-scale Information, Education and Communication (IEC) projects utilizing the media, public education system, and subculture became the mainstream together with community-based projects targeting vulnerable population. Voluntary counseling and testing (VCT) gained its popularity, and a more efficient surveillance systems which respected human rights were introduced.

However, such changing trends in the global HIV/AIDS actions had hardly any influence in Japan. Multi-ministerial/multi-sectoral partnership is unlikely to materialize, and HIV/AIDS education and awareness-raising efforts are totally insufficient. The necessity to promote the linkage between HIV-testing and counseling is not even on the policy agenda, and the surveillance system still remains an "HIV/AIDS case report" unable to provide accurate information on the current epidemiological situation of HIV infection. The most serious case is the situation of foreign residents in Japan. There is a great lack of access toprevention measures, testing and treatment.

In July 2005, the International Congress on AIDS in Asia and the Pacific (ICAAP) was held in Kobe. Although it eventually succeeded in gaining the support of the MHLW in the last stage, the Congress was managed almost entirely by the non-governmental sector. Though the scale may be still small, , numerous groups pursuing HIV/AIDS issues are emerging within gay communities and the youths. Even the business sector hitherto weak in responding to HIV/AIDS issues, is becoming proactive in recent years especially among the foreign capital companies in Japan. The willingness to be involved in the fight against HIV/AIDS is increasing amongst each of the non-governmental actors: the business sector, NGOs and the community.

Whether the power of the private sector will be able to conquer this "nonfeasance", the negative legacy of the 80s, would be the key to the future of Japan's response to HIV/AIDS. If this barrier is not broken, it would be inevitable for Japan to remain in this state of torment for still many years to come.

released: 31st, March, 2006

This article is written by Masaki,INABA
Program Coordinator on HIV/AIDS and Infectious Diseases, Africa Japan Forum

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