When 44-year-old Tokyo resident Isao was struck down by chronic diarrhea in June earlier this year, AIDS was the furthest thought from his mind. “I just thought I had a regular illness,” said Isao, who asked for his surname to be withheld.
However, the craftsman suspected his illness was more serious after he started losing a large amount of weight, dropping from 60 kg to 45 kg in just two months.
Isao visited a doctor and was given a prescription for anti-diarrheal medicine. Nevertheless, his condition continued to worsen.
He underwent additional medical tests and consulted with a number of doctors, and yet his illness remained a mystery.
Doctors then discovered a tumor in the soft tissue surrounding Isao’s left eye and he was referred to Tokyo Medical University Hospital in Nishi-Shinjuku for surgery.
Concerned about his extreme weight loss, the doctors at Tokyo Medical University Hospital decided to postpone surgery and carry out further tests in order to discover the root cause of his illness.
The results were conclusive: Isao had AIDS.
As an actively gay man, Isao said he was acutely aware of the associated risks of contracting the human immunodeficiency virus. Even so, he had never volunteered to be tested. When he found out he had tested positive for HIV, he experienced mixed emotions.
“I did feel some shock, but not to the degree where I felt I would never get well again,” Isao said. “I also felt a little relief to finally know what was wrong with me.”
Yet, Isao said these feelings of shock and surprise were also accompanied by a deeper sense of being overwhelmed by the inevitable. “It was like the day that I feared — and knew would finally come — had arrived,” he said.
At the same time Isao discovered he was HIV positive, he was also told he had Kaposi’s sarcoma and cytomegalovirus. The presence of these two illnesses confirmed that his HIV had already developed into full-blown AIDS.
Kaposi’s sarcoma is a type of cancer that is generally regarded as one of the classic, AIDS-defining illnesses.
Symptoms of the disease typically include highly visible, red or purple skin lesions that appear on the surface of the body, although these lesions sometimes only manifest themselves internally, in locations such as the digestive tract or the lungs.
In Isao’s case, these symptoms didn’t appear on the surface of his body, only internally in his esophagus and large intestine (although the tumor surrounding his left eye was also caused by Kaposi’s sarcoma).
Cytomegalovirus, a genus of the herpes virus, is also listed as an AIDS-defining condition and was a major cause of death in AIDS sufferers in the United States in the early 1980s.
Isao doesn’t know who he contracted HIV from, but says he used to frequent hattenba (cruising spaces) around Tokyo to have anonymous gay sex and believes this is how he became infected.
“I didn’t just visit saunas, but also went cruising in public parks and occasionally paid for sex,” Isao said. “I did this regularly for a long period of time. Sometimes I practiced safe sex, sometimes I didn’t. In situations where I only had oral sex, I didn’t use a condom.”
He said he almost always used a condom when having anal sex, but there were a few occasions that unsafe sex occurred, such as when a sexual partner removed a condom during intercourse and he wasn’t aware of it until it was too late.
“However, it is also possible to become infected through oral sex, so it could well have been through that route,” he said.
Isao believes the issue of unsafe sexual practices in the gay community is part of a wider problem in Japanese society relating to public perceptions of HIV and AIDS.
“Japanese people in general have a low level of awareness about HIV,” Isao said. “They don’t have a strong sense that there is danger and that they must be very careful.”
He suspects this is related to a general tendency many Japanese have to keep any perceived problems at arm’s length.
“In Japanese, we have a proverb: Taigan no kaji (The fire across the river),” Isao said. “This means that even though there is serious danger and we are able see it, the problem is over there, so the people on this side of the river are safe. Japanese people still haven’t escaped from this mentality.”
Forty-four-year-old Briton and long-term Tokyo resident Neil Grainger also discovered he was HIV positive completely by accident.
Grainger was diagnosed with a malignant melanoma in July last year and while undergoing blood tests as part of standard, pre-surgery screening, his doctors discovered he also had HIV.
“It is fair to say that if I hadn’t been diagnosed with cancer, I may well be unaware of my HIV status to this day,” Grainger said. “There is a definite lack of testing going on in Japan. There is one clinic that routinely offers free HIV tests in Shinjuku, but compared with the U.K. there is a definite lack of a push to get tested here.”
Grainger believes fear of a positive diagnosis is the underlying factor that prevents at-risk people from getting tested. “The ‘ignorance is bliss’ attitude to HIV status is still prevalent, mainly because people still think of the virus as it was portrayed years ago,” he said. “If people were aware of the medicines available and aware that HIV is no longer a terminal disease, they may be more willing to be tested as the fear of being diagnosed positive may stop being the reason they avoid the test.”
Grainger also expressed concern about the lax attitude to safe sex, even in high-risk situations.
“There is a lot of unsafe sex practiced in Japan in places where you would expect safe sex to be standard in the West, such as at saunas or cruising spaces,” he said. “Also, these places are popular with openly gay men and closeted gay or bisexual men, meaning that a good percentage of people who frequent this kind of establishment are also in a relationship with a woman or even married.”
Although Grainger no longer frequents Tokyo’s gay cruising spots, he did in his earlier years and he said he was surprised by the lack of encouragement to practice safe sex. “It is shocking, for example, that 2-chome’s most famous gay hattenba (sauna), 24 Kaikan, doesn’t provide easy access to free condoms. If you want a condom, you need to either take one with you or ask at the front desk,” he said. “As a lot of people also use this kind of place as a form of cheap accommodation after drinking in the area, (they) may be more prepared to take a risk than they would do normally. On the occasions that I have stayed overnight at 24 Kaikan, the amount of men who seemed completely disinterested in using a condom was quite shocking.”
However, despite the laissez-faire attitude to safe sex displayed by some corners of Tokyo’s gay community, there are also local organizations working hard to promote and educate at-risk people about the importance of taking precautions.
One such group is 2-chome-based nonprofit organization akta, which is working hard to raise awareness about safe sex practices and the dangers of HIV among Tokyo’s gay community.
The Health, Labor and Welfare Ministry created community center akta in Shinjuku’s 2-chome district in 2003. The ministry has also established community centers in Osaka, Sendai, Fukuoka and Okinawa.
Akta researcher Kohta Iwahashi said he was extremely concerned about the high rate of HIV infection in Japan’s gay community, which he said was on the rise.
According to the Health, Labor and Welfare Ministry’s AIDS Surveillance Committee, there were roughly 1,500 newly reported HIV patients in the country in 2012.
The total number of HIV/AIDS patients nationwide on an accumulated basis is now more than 21,000, 14,706 of whom are HIV-infected and 6,719 have full-blown AIDS.
Iwahashi believes the increase is somewhat connected to deeply entrenched, yet outdated perceptions relating to condom use in wider Japanese society.
“It is taking a long time for the idea of using a condom for gay sex to become the new norm. In Japan, education about condom use has traditionally been focused on preventing pregnancy, and gay men, of course, don’t have to worry about pregnancy,” he said. “Therefore, most people see condoms as a tool for preventing pregnancy, not for stopping STDs (sexually transmitted diseases). There is a problem with government policy relating to education about HIV.”
In short, Iwahashi believes that “more money and energy needs to be directed toward developing a sound policy on how to educate people about the risks of HIV and gay sex.”
Akta Director Junko Araki echoes this sentiment, saying the main problem is directly related to the manner in which sex education is carried out in Japan.
“I think less time is given to sex education in the schools in Japan in comparison to many other countries and, within that limited space, even less time is spent on education related to HIV and gay sex,” she said.
One of the primary roles of the community center, Araki said, was to help try and bridge this knowledge gap and provide members of the public with information about HIV and sexuality.
“There are not a lot of people who are interested in HIV, but we want to give young people the opportunity to come here and learn about the issue,” she said. “Therefore, we have a lot of events here to bring at-risk people into the center. This is a free space, so people can come in for a consultation any time.”
As well as managing a community center in 2-chome, akta also runs a number of outreach programs in the gay community. One of the center’s long-running projects is called Delivery Boys — a pun on the term “delivery health,” or deriheru, a common term in Japan for escort services.
Instead of providing sexual services, however, volunteers visit gay bars and clubs in Shinjuku’s 2-chome area each week, and deliver free condoms and information about safe sex and HIV testing.
Araki said there are about 350 bars in the 2-chome area and so far about 170 of them are involved in the project.
Akta runs a similar project called Adult Delivery that specifically targets saunas, gay porn shops and brothels across central Tokyo, and is also engaged in a number of other outreach projects.
Unlike programs in Western countries that tend to focus on the mass distribution of large amounts of free condoms, Iwahashi said the focus of Delivery Boys and similar projects was directed more at putting condoms in a wide variety of different places.
“So, we use condoms with eye-catching packaging as a way of changing the image people have in their minds of what a condom is,” he said.
“We want to change the image of a condom as being thought of as simply a method of preventing pregnancy to something used in relation to stopping STDs, or for the benefit of one’s health,” he said.
“The idea is not to encourage people to think, ‘Well, there are plenty of free condoms around town so I don’t need to bother buying them,’” he said. “Our strategy is not to simply increase condom use, but also to try and change the way people think and encourage them to get into the habit of buying condoms themselves.”
Where to get help:
Nishi-Shinjuku Public Health Center Free HIV tests 7-5-8 Nishi-Shinjuku, Shinjuku Ward, Tokyo; tel: 03-3369-7110 (English, Spanish, Portuguese, Thai), web: www.city.shinjuku.lg.jp/foreign/english/oshirase/teiki/aids.html
Community center akta 301 Daini-Nakae Bldg., 2-15-13 Shinjuku, Shinjuku Ward, Tokyo; web: www.akta.jp
Japan Foundation for AIDS Prevention 5F Suidobashi Bldg., 1-3-12 Misaki-cho, Chiyoda Ward, Tokyo; web: www.jfap.or.jp
Services for the Health in Asian and African Regions 5F Maruko Bldg., 1-20-6 Higashi-Ueno, Taito Ward, Tokyo; web: share.or.jp/english
Association for Aid and Relief, Japan 7F Mizuho Bldg., 2-12-2 Kamiosaki, Shinagawa Ward, Tokyo; web: www.aarjapan.gr.jp/english