The Epidemiology of HIV/AIDS and Gay Men's Community-Based Responses in Japan[*]
Jane Koerner and Seiichi Ichikawa
Japan is considered to be a country of low HIV prevalence with 11,573 HIV and 5,330 AIDS reports, as well 1,439 separate HIV/AIDS reports through infected blood products, at the end of 2009. However, since 1996, Japan is experiencing steadily increasing HIV infections particularly among men who have sex with men (MSM) with surveillance data indicating that 68 per cent of newly reported HIV cases in 2009 were acquired through male to male sexual transmission. This paper aims to summarise the epidemiological situation in relation to HIV among MSM, describe community-based responses, and identity future challenges to scaled-up prevention responses among MSM in Japan.
Table 1. HIV cases and AIDS patients, 1985–2009, Japan 2009. Source: Annual Report on HIV/AIDS Surveillance in Japan, National AIDS Surveillance Committee, Ministry of Health, Labour and Welfare.
The Epidemiology of HIV/AIDS among MSM in Japan
Consistent with the HIV epidemic in the Asian region, HIV appeared in Japan in the mid 1980s. Annual surveillance commenced in 1984 and early assumptions were that the Japanese HIV epidemic represented a new pattern with equal rates of HIV transmission through heterosexual and homosexual sex. Since 1996 the numbers of HIV infections and AIDS cases reported through heterosexual contact among Japanese nationals has remained constant, while yearly reports among MSM have continued to increase steadily.
Table 2. Mode of infection of Japanese male HIV cases and AIDS patients, 1985–2009, Japan. Source: Annual Report on HIV/AIDS Surveillance in Japan, National AIDS Surveillance Committee, Ministry of Health, Labour and Welfare.
New HIV infections in Japan are now largely concentrated among MSM. The 2009 surveillance data indicates that 68 per cent of reported HIV and 48.7 per cent of AIDS cases were acquired through male same-sex contact. Among Japanese men, HIV transmission through same-sex contact was concentrated in the 25 to 35, and 35 to 49 year-old age groups, but infections among younger and older age groups have shown significant increases in recent years.
Table 3. Japanese male HIV cases and AIDS patients due to homosexual contact, by age group, 1985–2009, Japan. Source: Annual Report on HIV/AIDS Surveillance in Japan, National AIDS Surveillance Committee, Ministry of Health, Labour and Welfare.
Despite the overall pattern indicating yearly increases in the number of HIV infections, the 2009 reports showed a significant decrease in HIV, while AIDS cases were at an all-time high. The AIDS Surveillance Committee has stated that the possible reason for the decreased number of HIV reports was due to the diversion of staff and resources from public health centres to deal with the swine influenza epidemic; if this is indeed the reason, it exposes a weakness in the current system of HIV testing and reporting.
The earliest sero-behavioral survey among MSM, conducted among 531 gay male sauna clients in Nagoya in 1990, did not indicate high rates of HIV prevalence or HIV transmissible risk behaviours. The survey reported a HIV infection rate of 0.38 per cent, low rate of anal sex (25%), and relatively high condom use during anal sex (50%). The next survey conducted in the Tokyo area in 1996 reported on rates of HIV positivity of tissues and condoms obtained from individual cubicles in men's saunas which found the rate of HIV positivity to be 19.4 per cent. Since 1996 sero-surveillance data has been available from gay friendly HIV testing sites in Tokyo, Osaka and Nagoya. While these data are biased due to the sampling and recruitment methods used, the pattern is of gradually increasing HIV prevalence.
Table 4. HIV infection rates, risk & preventive behaviors of MSM in Asia: How does Japan compare? (Source: Ninth International Congress on AIDS in Asia and the Pacific, 2009, Bali, Indonesia)
The most recent 2008 and 2009 data available indicates sero-prevalence rates of 5.7 per cent, 5.1 per cent and 4.7 per cent in Tokyo, Osaka and Nagoya, respectively. While the HIV prevalence rate of the general population is unknown for comparison, surveillance data reports that HIV prevalence among blood donors was 0.0019 per cent in 2009. Regionally, almost half the numbers of new HIV infections are among MSM in Tokyo, followed by Osaka and Nagoya. However, increasing HIV reports among MSM in smaller cities such as in Sendai, Hakata and Okinawa indicate HIV prevalence is increasing among MSM living in smaller cities and regional areas.
While accurate national estimates of the size of the homosexual population are difficult, such estimates are necessary to inform government HIV-related policy, project planning and budget allocation for HIV prevention and support for MSM. Ichikawa et al. conducted a general population survey of male adults in a Master sample of Census residents living in the Tohoku, Kanto, Tokai, Kinki, and Kyushu regions, focusing on self-reported same-sex practice. Among the 3,700 men aged between 20 and 59 years old surveyed 2.0 per cent reported having had sex with another man at least once in their lifetime. Applying the 2 per cent male same sex experience rate to male adult population figures obtained from the national census, the number of MSM in Japan is estimated to be over 682,000. Methodological issues, including the low number of younger age groups included in the Master sample and low response rates among the younger age groups surveyed means this figure may underestimate the number of men who have sex with men in Japan. However, using the 2.0 per cent same sex experience rate and applying it to reported HIV and AIDS cases among males aged 20 to 59 from 2008 AIDS surveillance reports, the prevalence of HIV and AIDS among MSM was estimated to be respectively 96 times and 33 times greater than that among non-MSM. The use of AIDS Surveillance data is most likely to be unrepresentative due to low rates of HIV testing among gay men's community samples in Japan (Lifetime 53.6%, Previous 12 months 29.1%) in comparison with MSM in developed countries including Australia (life-time 83⏻93%, previous 6 months 40–55%), and the USA (life-time 92%, previous 12 months 77%). The low uptake in HIV testing among gay men's community samples, and social stigma linked to homosexuality, may also inhibit declaration of same sex behaviour at HIV testing sites (or in behavioural research).
Social situation faced by MSM in Japan
Historically, male-to-male sex was sanctioned among Buddhist priests and samurai and was openly represented. However in the Meiji and post Meiji eras (from 1868–1920s) medical-legal frameworks were imported from the West which defined male same sex behaviour as deviant. Homosexuality is not illegal in Japan, but there is strong stigma and discrimination towards sexual minorities including gay and bisexual men. Consistent with many Asian societies where individual sexual identity is subsumed under social norms that privilege heterosexual marriage and procreation, homosexuality is stigmatized rendering people from sexual minorities as invisible. As a result, gay and bisexual men are stigmatized and face of strong pressure to conform to a conventional heterosexual life.
Research data indicates that Japanese gay and bisexual men experience negative psychological consequences relating to their sexuality. In a 1999 Internet survey of 1,025 gay and bisexual men, a little less than half (49.0%) of respondents had told no one about their sexual orientation. A significant percentage of the sample had experienced abuse relating to their sexuality with 83.0 per cent reported being bullied at school and 54.5 per cent experiencing abuse related to their sexuality such as being called a homo or okama (a pejorative word similar in meaning to the English term 'faggot'). Seventy-one percent of respondents reported high levels of anxiety, while over fifteen percent had attempted suicide and thirteen percent showed high levels of depression. Other qualitative and quantitative research indicates that these men experience pressure to marry and psychological distress about fitting into heterosexual social institutions.
A 2005 internet study among 5,731 gay and bisexual men also indicated that the school-based HIV prevention education that gay and bisexual men receive is inadequate. Only 4.3 per cent out of 5,731 gay and bisexual men in the survey reported receiving positive information about homosexuality in school. The majority (93.2 per cent) indicated they had received inadequate information, with this statistic comprised of almost 79 per cent of men who had received no information at all, and 15 per cent who received information that portrayed homosexuality in negative terms.18 These results have not changed since the internet survey was first conducted in 1999. Regarding the content of AIDS education received at school, a bit under half (47.4 per cent) of the respondents were taught about HIV transmission and prevention in relation to sex between men and women, while only eleven percent received any information on HIV transmission and prevention regarding sex between men. This indicates that the implementation of improved sexuality and HIV prevention education for MSM in schools is much needed.
Community mobilization towards HIV among gay men has followed a different trajectory to that seen commonly in the West. While there are a few gay men's groups who have lobbied openly for gay rights using a model similar to that seen in Western cities, many Japanese gay men do not follow Western notions of coming out, adopting a gay identity, or of fighting for gay rights. While Japanese gay male protagonists have cited initial reluctance on the part of gay men's groups to address HIV within their communities, gay groups conducting HIV-related activities are gradually increasing, but the overall number of individuals involved remains small. The gay men's community, for the most part, consists of commercial facilities such as men's bars, shops, saunas and dance parties concentrated in large cities, and small social and cultural groups such as gay music, sports, and university groups. This context explains why the number of gay NGOs nationally is still quite low. There is an established base for gay NGO and community involvement in HIV prevention and support activities, so there is potential for this involvement to increase. Ongoing government funding and commitment to increasing NGOs capacity to implements a community development approach, and fundraising activities among gay men themselves, could prove critical in increasing resources for gay HIV related-community activities.
The background to the increase in HIV infections among MSM in Japan
Early HIV education materials targeting the general population were inadequate in informing men about the transmission of HIV during anal sex, despite HIV-related information and free and anonymous HIV testing having been available nationwide at public health centres since 1989. This was partially due to lack of research identifying the specific prevention and support needs of MSM, but also due to lack of sensitivity to issues faced by sexual minorities, including gay and bisexual men. An early pamphlet published in 1987 distributed by public health centres referred to 'homosexuality' as one of the routes of HIV transmission (as opposed to anal sex regardless of sexual practice), and stated that HIV can be prevented by 'correct knowledge and normal lifestyles' (tadashii chishiki ni futsuu no seikatsu AIDS wa korede yobou dekimasu). These early HIV prevention materials were not adequate in meeting the needs of MSM, and contributed to marginalizing and stigmatizing of gay men.
In Japan, HIV prevention programs for MSM commenced in the late 1990s. One barrier hampering prevention efforts was the weak partnerships that existed between researchers and gay men's groups, which delayed the translation of research results into the development of targeted prevention programs. At this time in the history of the epidemic, a top-down approach characterised relations between these two different groups. [23, 25]. However, in the early 1990s partnerships between researchers and gay men saw the translation of behavioural surveys into prevention and support activities.
Successful collaboration between gay men, gay bar owners, and a local government health officer in Osaka led to the establishment of the gay NGO, MASH Osaka, in 1998. This partnership facilitated the conducting of a base-line and follow up surveys which collected data on HIV sero-prevalence and behavioural information between 1999 and 2002. The research results obtained were instrumental in directing HIV prevention and support activities in Osaka, and this model, in which researchers work in partnership with and to support local gay NGO activities, was subsequently repeated in other regions funded by the Ministry of Health Labour and Welfare (MOHLW) as the Study Group on the Development and Implementation of Community-based HIV Prevention Interventions for MSM.
The increasing number of new HIV infections saw the Ministry of Health, Labour and Welfare (MOHLW) introduce a new infectious disease policy in 1999. In response to the yearly increase in HIV among MSM, documented through the Osaka and Minami Shinjuku HIV testing site data, the MOHLW released a MSM-related HIV policy in 2001. This policy is significant in that it was the first time that gay NGO representatives were included on a committee with researchers and medical doctors to develop the policy. This committee recommended a number of concrete policy measures including: the promotion of targeted information for MSM; improvement of HIV testing facilities for MSM; and the provision of support for local governments to conduct MSM targeted prevention and support activities. These recommendations led to the development of funding for much needed research and gay men's community centres in Tokyo and Osaka in 2003. The gay men's community centres represented the first specific and ongoing funding for MSM-related HIV prevention activities and since its inception there are now six gay men's community centres operating nationally.
Part of the reason for the lack of targeted programs for MSM lies in the low levels of funding for domestic community development activities in general and MSM targeted HIV prevention programs specifically. This is despite the fact that Japan supports international aid that includes HIV programming in developing countries. Funding for all HIV prevention activities carried out by local governments (including telephone counselling services, HIV testing services, funding of NGO activities) is reported to have declined from 1.69 billion yen in 1997 to 557 million yen in 2004, and only a few local governments have implemented HIV prevention activities specifically targeting MSM. Earlier problems of poor working relationships between researchers and gay and bisexual men have improved. Furthermore, epidemiological and behavioural data on the situation regarding HIV among MSM is conducted among gay men's community samples in a number of regional areas. However, the lack of commitment to increasing the capacity for NGOs to implement a community development response, including ongoing funding for national prevention and support programs remains a barrier to increased scale up of prevention and support programs for MSM
The community-based response by gay NGOs
Researchers, gay men, gay business owners and local government health officials established MASH Osaka in 1998, using pilot funding from the Ministry of Health, Labour and Welfare. This was followed by Rainbow Ring in Tokyo in 2002, Angel Life Nagoya in Nagoya in 2000, Love Act Fukuoka in Hakata in 2003, Yarokko in Sendai in 2005, and Nankuru in Okinawa in 2007. These groups have followed a similar model, in which an autonomous NGO made up of gay community members collaborates with researchers and in many cases, physicians working at designated HIV treatment centres. The approach follows a community development model, which encourages gay individuals and groups to carry out education and support programs developed by and for them, but with input by public health and other professionals.
Since 2003, with funding from the MOHLW administered through the Japan Foundation for AIDS Prevention in 2003, community centres were established to conduct HIV prevention and support activities for MSM in Tokyo and Osaka. Other centres were opened in Nagoya in 2004, Fukuoka in 2006, and Sendai and Naha in 2009. Run by gay men's NGOs in each area, the community centres have become important bases for promoting education and awareness campaigns. The gay community centres have been instrumental in networking with gay businesses, gay event organizers and other gay groups, as well as artists and individuals not necessarily interested in HIV-related activities. Through the holding of art, social and workshop-events, including dance parties, flea markets, language classes, and exhibitions, opportunities have been created to encourage many gay men to visit these community centres, where they are also exposed to information about HIV. Furthermore, gay male artists have been involved in the design of prevention materials, including the design of different condom packets, which are now collectors items, as well as posters and internet web pages.
In addition to gay men's NGOs working with the study group on the development and implementation of community-based HIV prevention interventions for MSM described above, a number of other NGOs providing HIV prevention and support services exist. Organisations in Tokyo include: PLACE Tokyo (an organisation providing support for people with HIV and their families and friends), JaNP+ (the Japan Network of People living with AIDS) and OCCUR (a gay and lesbian liberation organisation providing telephone counselling, HIV testing and support). In addition, Yokohama Cruise is a gay men's NGO working in Yokohama, and HaaT Ehime works in Ehime in the south of Japan.
Behavioural surveys, sociological research, and program evaluation research has been conducted to evaluate these activities. A survey of participants at a MSM club event in Osaka indicated that condom use during anal sex, HIV testing uptake and the purchasing of condoms has been steadily increasing, with similar results found in Tokyo. However, findings from the 2007 Osaka bar survey indicate lower uptake of HIV testing and condom use among MSM aged forty years and above. This indicates that older MSM need to be the focus of future HIV prevention, education and support programs by NGOs working with MSM.
Table 5. Osaka Club Survey: Annual rates of condom use by MSM during insertive anal sex with regular partners (Source: S. Ichikawa, Research Overview, Study Group on the Development and Implementation of Community-based HIV Prevention Interventions for MSM Research Report 2008, Ministry of Health, Labour and Welfare, Tokyo, March 2009: 1–21 (in Japanese).
Table 6. Osaka Club Survey: Annual rates of condom use by MSM during insertive anal sex with casual partners. Source: S. Ichikawa, Research Overview, Study Group on the Development and Implementation of Community-based HIV Prevention Interventions for MSM Research Report 2008, Ministry of Health, Labour and Welfare, Tokyo, March 2009: 1–21, (in Japanese).
Table 7. Osaka Club Survey: Annual rates of HIV testing and condom purchasing. Source: S. Ichikawa, Research Overview, Study Group on the Development and Implementation of Community-based HIV Prevention Interventions for MSM Research Report 2008, Ministry of Health, Labour and Welfare, Tokyo, March 2009: 1–21 (in Japanese).
Strategic Research for HIV prevention in Tokyo and Osaka
In 2006, the Ministry of Health and Welfare began funding a five-year "Strategic Research for AIDS Prevention among MSM" research project, which aims to double the rate of HIV testing and reduce the number of new HIV infections by 25 per cent among MSM in the Tokyo and Osaka areas. In order to achieve these goals, the research team, consisting of staff working in local HIV prevention NGOs and university and government public health researchers, developed and implemented programs to increase the awareness of the availability of HIV testing services and the merits of early detection. This was accompanied by capacity training for HIV testing staff working in public health centres to address the need for HIV counselling and testing that is sensitive to gay men's specific sexual and lifestyle issues. In addition, support services for MSM who are concerned that they might have HIV and for those who test positive have been set up.
While historically, gay men's groups tended to be rather disconnected in Japan, the Strategic Research project has facilitated the development of a number of collaborative projects between PLACE Tokyo (an NGO that provides support for people living with HIV, their families and friends) Rainbow Ring and JaNP+ (network of people living with HIV/AIDS groups). In order to raise the visibility of gay men and women living with HIV the Living Together Project is a forum through which people can talk about their experiences and thoughts concerning HIV testing and living with HIV. Stories from the project have been used in a number of different events, including readings accompanied by music, photographic exhibitions, and radio shows. These events have involved people living with HIV, medical professionals, government officials, popular singers, actors, artists and musicians. The Living Together slogan has also been taken up by the Ministry of Health and Welfare as the slogan for AIDS Day since 2007.
The model of community development described here has shown success in achieving HIV preventive behavioural change, increased awareness of the issues faced by people living with HIV and AIDS, and has led to improved collaboration between a wide range of gay community partners, local government agencies and research institutions. Current activities now should be taken to the next level, and become a national program. However, there are a number of challenges that need to be addressed in order to establish a national program for HIV prevention and care for MSM in Japan.
Challenges to HIV prevention, care and support among Japanese MSM
Despite the success of the community development model described above, a number of weaknesses remain. Current HIV prevention programming is based on pilot research projects. It is imperative that increased funding is secured to extend evidence-based HIV prevention and support services for MSM nationally. In the light of limited ongoing funding for a coordinated network for HIV prevention among MSM, and declining local government funding for HIV testing and prevention services, a well-funded long term vision and strategic plan is needed in order to arrest the increasing number of new HIV infections among MSM, and to give adequate support for MSM living with HIV.
Greater co-ordination is needed among government departments, including the Ministries of Health, Education and Justice, as well as within local government. In addition, the current system of re-deployment of civil servants means that government officials are moved after 2 to 3 years in a post. This means constant advocacy and sensitisation efforts by NGOs, and it is a barrier hampering the development of effective HIV policies. In order to improve co-ordination for prevention and support activities, a national coordinating body needs to be established, including representatives from the government, HIV-related NGOs, especially gay men's NGOs, researchers and clinicians. A similar body could also co-ordinate HIV research among MSM nationally, in order to identify research needs and priorities, distribute funding and oversee evaluation.
HIV research, and in particular, research with MSM attracts small numbers of researchers, most likely due to the stigma attached to researching sexuality in Japan. A greater number of researchers from a wide range of disciplines, including social science, public health, education, media studies, behavioural sciences, policy studies, cultural studies, gender studies and sexualities studies are needed to carry out research with MSM, in order to place the issue of HIV transmission and prevention among this group of men in its proper social context.
However, the most pressing need is to increase funding to and political commitment for a nation-wide expansion of efforts towards MSM community development in order to sustain, and optimally increase gay men's and women's community based activities and their coverage. These NGOs have made connections with some gay businesses mainly concentrated in inner-city areas, but more funding is needed to increase outreach to men's bars located outside of these areas that are patronised by different demographics of men. Furthermore, in many cities links with local government departments are still rather weak. Stronger partnerships are needed in this area to facilitate dialogue on the issues and problems faced by MSM and other sexual minorities, leading to local government programs which are more sensitive to and inclusive of the needs of these groups.
In the face of increasing HIV infections among MSM, survey results indicate that community development activities carried out by gay NGOs have shown some success in increasing HIV preventive behaviours among MSM evidenced by increases in HIV testing and condom use among some samples of gay and bisexual men in some regional areas. However, Japan's response to the HIV epidemic among MSM faces a number of challenges. There is a need to expand activities by gay men's NGOs to promote HIV awareness in a wider range of cities and regions and to target both the younger and older age groups of MSM, who appear to be at a higher risk. NGOs face a lack of full-time paid staff and are overly dependent on unpaid volunteers. There is a low level of public funding for gay community development activities. Gay NGOs are too dependent on research funding to conduct their HIV prevention education activities. Ongoing funding is needed for gay NGOs and community centres to continue conducting HIV prevention and support, including the provision of sexuality sensitivity training for health centre staff and promotion of information on HIV testing services. Furthermore, networking within and outside of gay communities is needed to strengthen policy and program efforts. There is an urgent need for intervention, for if the current level of effort is maintained, it is unlikely that the growing HIV epidemic among Japanese MSM will be halted.
[*] We use the term 'gay' in gay community, gay NGO and gay community centre to describe the related activities in the context of this paper, although the activities of some groups in some regional areas are more inclusive of a wider range of identities and sexualities. Many of the 'gay' NGOs are conscious of the labelling problems associated with the use of foreign and local terms and tend to rely on more inclusive language and imagery, which would be difficult to adequately describe in the scope of this paper.
The authors acknowledge financial assistance from a Japanese Ministry of Health and the Labour Sciences Research Grant: Research on HIV/AIDS.
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 Tetsuro Onitsuka, Jane Koerner, Noriyo Kaneko, Sohei Yamada, Satoshi Shiono, Hiroyuki Tsuji, Daisuke Goto, Toshio Machi, Sachiko Omori, Hirokazu Kimura and Seiichi Ichikawa, 'HIV risk & sexual behaviors of middle aged MSM: findings from the 2007 Osaka bar survey,' Poster presentation at 9th International Congress on AIDS in Asia and the Pacific, 9 –13 August 2009, Bali Indonesia.