The curtain goes up this afternoon on a black drama which the organisers hope will expose to the world the tragedy of Japan’s hidden AIDS victims – the 1,800 people infected with the virus because the Government failed to stop the distribution of contaminated blood products. In the main hall of the futuristic new international convention centre in the port city of Yokohama, actors, activists and people with AIDS will act out the decade-long battle for recognition and compensation by Japan’s hemophiliac community. It’s not part of the official program of the 10th international conference on AIDS – the annual extravaganza of AIDS researchers and activists – which is expected to attract 10,000 people from 140 countries.
But Mr Toshihiro Suzuki, an organiser and lawyer representing some of the hemophiliac victims, believes those attending – including a delegation from Australia – will learn a lot more about the appalling treatment of people with AIDS in Japan from this presentation than from the official papers to be read during the week.
Japan is a peculiar place to host Asia’s first AIDS conference. If the Australian delegates wander a few hundred metres from the carefully sanitised Minato Mirai 21 “super city” where the conference is to be staged, they will find themselves in a world of ignorance, fear and rejection akin to medieval Europe during the time of the plague. Needless to say, there is no paper listed on this subject.
For a start, no-one has the faintest idea how many Japanese have HIV, the AIDS virus. People who have contracted it through blood products – more than half Japan’s infected population – aren’t even counted in the official HIV toll. Instead, bureaucrats refer, euphemistically, to them having “blood product disease”.
The latest count is 3,316 cases – about one-40th the incidence in Australia which, with a seventh of the population, has 18,000 people with HIV. But everyone knows that Japan’s is a cloud-cuckoo-land figure.
Because Japanese are terrified to admit they have the virus – or, indeed, don’t know because their doctors won’t tell them – there are thousands of people living in a twilight world of secrecy and shame. Shuichi Tani, the head of the Health and Welfare Ministry’s Health Service Bureau, says the real number is six to eight times the official figure, and growing fast.
Should any of the expected 1,000 conference delegates with HIV need medical attention, they would be well advised to go to the Yokohama hospitals, dentists and clinics which have been specially designated for them. Almost anywhere else, they will, literally, be thrown into the street.
The most disgraceful case that has come to light involves a 23-year-old Thai woman, one of tens of thousands of foreign women working in the entertainment industry in Japan. She was employed at a bar in the town of Kofu, a wine-growing area 120 kilometres west of Tokyo.
In December 1992, she fell from the second storey of the bar and broke her back. According to depositions in the court case she has filed, she was taken to a private hospital where she was kept on pain killers for five days, tested for HIV without her knowledge or consent – then transferred to a municipal government hospital when she proved positive. The municipal hospital scheduled the surgery she desperately needed – but the operation was cancelled and she was discharged after someone telephoned the hospital to say she was HIV-positive.
Eventually, the unfortunate woman had to fly back to Thailand for treatment and is now paralysed from the waist down. A year ago, the Health Ministry declared it would remedy the situation by designating 94 hospitals, including one in each of Japan’s 47 prefectures, for AIDS treatment. The plan has been a total failure. So far there are just 16 hospitals on the list, most of which keep their names secret.
Forty prefectures of Japan have nowhere for HIV people to receive treatment; only nine of Tokyo’s 525 medical clinics have ever seen an AIDS patient; and only one dentist in 300 will have anything to do with them. There are two hospices in the entire country that will admit people dying of AIDS.
As for treatment, most of the newer, more promising overseas drugs, such as DDC, are banned in Japan. Nothing with any medical significance beyond some quack herbal “cures” has been developed. Hirotoda Hirose, a psychiatrist who will chair one of the conference committees, still refers publicly to patients as “AIDS carriers”.
A recent survey by nurses in the Tokyo area discovered – to no-one’s great surprise – that one in five of the city’s hospitals and clinics even refuses to tell patients if they test HIV-positive. This has led to outrageous incidents such as spouses, kept in ignorance about their condition, transmitting the virus to each other, with fatal results.
Partly it is because the hospitals say they are afraid other patients will shun them if it becomes known they admit people with AIDS. Just two years ago, a TV documentary exposed a secret “ward of shame” in a Tokyo hospital where AIDS patients were left to die, shunned by the staff, with their meals shoved across the floor to them.
But the bigger factor is the refusal of the Government to classify many of the AIDS treatments under the national health scheme. Hospitals are afraid they will get stuck with the bill, which can be staggering – a ministry survey of infected hemophiliacs found that treatment in the two years before their death cost an average of $240,000.
Toshihiro Oishi, a 25-year-old Tokyo paralegal and conference spokesman, is only the second Japanese with HIV to have come out. He has friends who were secretly tested during annual company medical check-ups, and who were sacked when they were discovered to be HIV-positive.
The first patient to have the courage to lead a public campaign was the poet Yutaka Hirata, 39, who died in May, a month after being wheeled through a Tokyo park to see the cherry blossoms for the last time. This is actually his pen-name – he kept his real name quiet after his sister threatened to commit suicide if he revealed it. Mr Oishi says the fear and discrimination are partly cultural.
The Japanese have a long tradition of ostracising people with diseases -indeed, Japan’s 6,500 lepers are still deported to special colonies where they are held as virtual prisoners. People with tuberculosis or psychiatric illnesses are similarly deprived of their human rights.
“There is no tradition in Japan Invalid extra lead parameter of individuals fighting to assert their rights in society,” says Mr Oishi. “In America, blacks, gays, and people with HIV have all obtained rights – but in Japan, it is something to be hidden.”
A story circulating in Tokyo has a young man studying at a college in the United States telephoning his father in Japan to break the news that he has become HIV-positive. “Don’t bother coming home,” his father is reported to have said. “In fact, why don’t you do us all a favour and commit suicide.”
Hotels in Japan routinely turn away anyone they suspect has AIDS. Just last October, the US playwright Alexander Martin was refused a bed in 18 Tokyo hotels, which all had vacancies. In 1992, Sean Duque, a Hawaiian singer, was refused accommodation when he came to Japan to attend an AIDS symposium. Both men had AIDS.
The Yokohama municipality has been running intensive courses for hospitality industry staff to try to avoid similar embarrassment during the conference. A hot-line has been inundated with callers panicking that they may contract the virus from cleaning toilets, shaking hands, or hanging onto the same strap on a train.
There will be a sad reminder of this prejudice in a park near the conference centre. Memorial quilts from around the world will be on display, with thousands of panels stitched by relatives of people who died of AIDS. Japan will be the only country where fearful families have mostly refused to allow the names, or even the initials, of the dead to be stitched onto its quilt.
As a result of this fear and denial, the people most at risk of AIDS are least likely to have been touched by the Government’s belated and inadequate attempts at education.
These efforts are greatly hindered by the fact that most Japanese schools have no sex education syllabus – 53 per cent of Tokyo high school students believe AIDS is hereditary, according to a recent poll.
The 200 or so lurid bars and clubs and bathhouses in the back alleys surrounding Shinjuku 2-chome – ground zero for Tokyo’s gay nightlife – are as raging as ever, says Mr Oishi. “The safe sex message hasn’t got through at all.”
But, curiously, if the official figures are worth anything at all, it is the straight community that is most at risk, particularly men who pick up streetwalkers. Of reported HIV infections, three times as many are from heterosexual as homosexual encounters – the reverse of the statistical picture in Australia or the US.
The figures seem to support the official contention that AIDS is a”foreign” disease – although that may be simply because the hordes of Thai, Filipina, Chinese, Malay, Korean and Colombian whores rounded up on the streets every night are compulsorily tested before deportation. Two in three don’t use condoms, and one in 20 is HIV-positive. Two years ago, the Japanese Government did begin an annual allocation for AIDS research and education.
This year it amounts to $150 million – “not much”by overseas standards, says Mr Oishi, who is still suspicious of the Government’s commitment to bringing HIV out of the closet.
Although the Government has said it would make an exception and allow people with drug and prostitution convictions to attend the conference, Hidenori Sakanaka, a judge in the immigration department, probably more honestly reflected the official view when he said recently: “Speaking for myself and the Government, we do not want that kind of person in the country. “It does not matter if they say they want to attend a conference – the law prohibits their entry.”
There was considerable debate last year among overseas HIV activist groups such as ACT-UP of the US, about whether or not the Yokohama conference should be boycotted. Groups from most countries finally decided to come – but scaled back their delegations. The 9,800 expected in Yokohama compares with 18,000 for last year’s conference in Berlin, and 16,000 in Amsterdam the year before
The Australian convener of People With AIDS, Geoffrey Harrison, says Australia will send about 20 people, compared with more than 150 last year. This is mainly, he says, because there will be little of importance in the scientific papers – Australian researchers are more interested in the conference on drug therapy to be held in Glasgow in November.
However, he is planning to attend today’s presentation by the Japanese hemophiliacs, where he will learn the shameful story of how they were knowingly infected with the AIDS virus, and of their ongoing fight through the courts for compensation – and to have the man responsible charged with murder.
Mr Suzuki, the lawyer, is no fool. He knows the victims of that other Japanese disaster, the hundreds killed and crippled by factory pollution in Minamata, are still battling through the courts 40 years later. He does not have the luxury of that amount of time – his case began five years ago, and now 25 of the 67 clients he started with are dead.
If nothing else comes of it, at least holding the conference in Japan will enable the hemophiliacs – and other shunned groups – to internationally embarrass their government, and, hopefully, shed a little light on Japan’s dark and secret world of AIDS.
Pub: Sydney Morning Herald
Pub date: Saturday 6 August 1994
Section: News and Features
Sub section: News Review
Word count: 2087
Caption: Illus: The first patient to have the courage to lead a campaign was Yutaka Hirata, who died soon after seeing the cherry blossoms for the last time. Photograph by Hideako Uchiyama/Weekly Asahi