IT was some time in 1987 that Ichiro Tanaka began to feel unwell and was sent by his doctor for a check-up at a local hospital not far from Tokyo. Although he was only 23 and otherwise pretty fit, Ichiro was a hemophiliac – a hereditary condition effecting only males, in which the body does not produce the agent needed to make the blood clot.
In the old days, most hemophiliacs simply bled to death at an early age. Even with modern treatment, many suffer from painful deformities of the arms and legs and can wind up in a wheelchair.
Ichiro had been treated since childhood with a product called Factor 8, a clotting factor extracted from human blood and freeze-dried into white crystals. Whenever he had a “bleed” – usually internally, when he knocked a knee or an elbow – his doctor, or his mother, would inject him to stop it before there was permanent damage.
The hospital Ichiro went to ran a number of tests, including one for HIV. With great relief, Ichiro, his wife and young child learned a few weeks later that everything was fine; he did not have the disease, the hospital told them.
Two years went by, and Ichiro – by now losing weight, feverish and desperately worried – went to another hospital. They discovered that he was HIV-positive and must have been for several years. He was now showing the symptoms of full-blown AIDS.
Less than a year later, in December 1990, Ichihiro died. A few months earlier his wife learned that he had given the virus to her.
Mr Toshihiro Suzuki, the lawyer representing Ichihiro’s widow, is convinced that doctors at the first hospital “knew he had the virus and deliberately concealed this from him … they are responsible for his wife contracting HIV”.
In Australia, this would be unthinkable. In the US, it would be illegal. But in Japan, says Mr Suzuki, “there is no such tradition as informed consent… doctors think they can get away with anything.”
Ichihiro’s widow is now Plaintiff No 28 (they are identified only by numbers, not names) in one of the biggest damages cases ever mounted in Japan, in which 92 hemophiliacs are suing the Government and five pharmaceutical companies.
They claim they contracted the virus through contaminated vials of Factors 8 and 9, refined from the blood of foreign donors with AIDS. They claim, in a case that has been dragging through the courts for more than three years, that the companies and the Government knew of the danger and did nothing to protect them.
Now, as many as half the hemophiliacs in Japan, as well as some of their spouses and children, may die.
Murao Kusabuse, another hemophiliac who contracted the virus from a Factor 8 transfusion, says: “Once you are found to be HIV-positive, you are treated, even in hospital, like a virus yourself, and your relatives attending at the bedside are treated in a similar way.”
For years, Japanese thought AIDS was something only foreigners caught. Even now, newspaper reports invariably highlight the Thai prostitutes tested HIV-positive after raids on sleazy bars in Shin-okubo, and publicity campaigns target overseas travellers. One outrageous government-sponsored booklet warns Japanese to avoid Germany because it has been “infested with homosexuals since ancient times”.
The facts tell quite a different story. Since the first HIV-positive patient was diagnosed in 1985, 3,094 cases have been reported to the health authorities. Of these, two-thirds (2,048) are Japanese hemophiliacs. Many of them – certainly several hundred – still have no idea they are carrying the deadly virus.
The figures, even though they may be a serious underestimate, are dramatically low by world standards. The US, with a little over double Japan’s population, has more than 50,000 cases of AIDS. Australia has 16,000, which, on a per capita basis, is 40 times as many as Japan.
Why this is, no-one seems to know.
Japanese do travel abroad less. There is very little intravenous drug use. The homosexual community is not as conspicuously promiscuous. Condoms are widely used.
However, the disease is now entrenched in the country, and most of the patients are Japanese, not foreigners.
The country’s hemophiliac community has been ravaged by AIDS in a silent epidemic that has remained hidden until now. More than 200 have died already.
“This is a closed subculture within a closed society,” says attorney Suzuki. “That is why it has taken so long for the information to get out. If a case of AIDS is diagnosed, the doctor won’t tell the patient, the hospital may refuse to treat him, he will have to keep his condition secret from his friends, even his family.”
It’s not hard to see why. Fear, ignorance and prejudice are rampant.
Half the Japanese polled recently by the Japan Broadcasting Company believe mosquitoes carry the AIDS virus, and one in four believes you can catch it through casual contact, such as sharing a cup.
Eighty-six per cent of hospitals refuse point-blank to treat people with the virus.
In one horrific case last December, a 22-year-old South-East Asian woman with HIV visiting Japan fractured her spine in a fall. She was refused treatment at a private and a public hospital, and was paralysed from the waist down when she was finally repatriated home.
Komagome Hospital, run by the Tokyo metropolitan government, became notorious last year after an AIDS patient hanged himself. Other patients came forward to claim that the few Tokyo hospitals which would admit people with the virus had no counselling, allowed no visitors, and staff would not even clean their rooms properly.
Of the 3,000 HIV patients in Japan, only 200 are receiving treatment with the most effective drugs, AZT and DDI.
Corporations and institutions of all sorts are going to extraordinary lengths to try to ferret out people who are HIV-positive. Electronics giant Matsushita has been “offering” its employees AIDS tests, and Tokyo’s Hokusei Gakuen University has gone to the extraordinary length of refusing to admit any foreign student who does not have an AIDS test; Japanese do not have to be tested.
“The prejudice is very strong … I have told my family, but not all my friends,” says Toshi Mitsui, another HIV-positive patient who is taking legal action. (Like Ichiro Tanaka, this is not his real name. Only two Japanese AIDS patients have “come out” publicly.)
The story unfolding in Tokyo District Court of how almost half of Japan’s 5,000 hemophiliacs were condemned to death is a sordid tale of the Government’s failure to protect the public against the greed of drug companies and the medical profession.
Secret memos dragged out of the American pharmaceutical industry in overseas litigation (Japan has no legal “discovery”) show that, at least as early as 1982 (less than a year after the first AIDS case was identified), the companies knew that the virus could be transmitted by blood.
In 1983, the US Government ordered screening of all blood products, and a simple heat treatment process was introduced to kill the virus. Early the following year, the pharmaceutical companies recalled all batches of suspect Factor 8.
But in Japan, where the mainly US companies were the major suppliers of Factor 8, nothing was done for 28 months, during which hundreds of hemophiliacs were exposed to contaminated products. There were no recalls, no screening and no “sterilising” of blood products.
In fact, data dug up by investigative journalist Ryuichi Hirokawa, who has written a book on the scandal, shows that as non-sterilised Factor 8 was progressively banned around the world, the international companies were dumping increasing quantities in Japan – so much so, that there was a price war, with the cost of imported blood products being cut by up to 50 per cent of the price of products made from noninfected Japanese blood.
This, argues Hirokawa, suited some hospitals and unscrupulous doctors who are reimbursed by the health funds on a fixed, rather than actual, cost basis. Suddenly, haemophiliacs represented big profits, as much as $A20,000 a year per patient. Doctors urged hemophiliacs to use more Factor 8, and to inject themselves at home as a “preventative” measure. Couriers used to dump dozens of bottles of it in insulated boxes on people’s doorsteps.
“They rounded patients up like milking cows,” says Yukio Yasuda, a hemophiliac who is president of Tokyo Friends of Hemophiliacs and a lawyer involved in the litigation.
In two years there were windfall profits of about $A100 million made by doctors and hospitals, as the five companies unloaded their “dumped” Factor 8 on the unsuspecting haemophiliacs. One Tokyo private hospital, which rounded up nearly 300 haemophiliacs, paid off debts of $A7 million and began a major expansion program with the profits.
“Unsuspecting” is not the right word. Most of the hemophiliacs had known about the possibility of AIDS transmission through blood products since July 1992, when the Mainichi newspaper carried a Washington Post article about it.
“They begged their doctors to change to domestic blood products, but the doctors refused,” says attorney Yasuda.
As early as 1983, at least one of the overseas pharmaceutical companies, Baxter Travenol, had developed a sterilisation technique and was offering Japanese hemophiliacs “safe” Factor 8. But, in the most extraordinary chapter of the story, the Government refused to allow the company to put the product on the market.
For 28 months, the Government’s advisory committee, headed by a prominent Tokyo medical professor, Takeshi Abe, insisted there was no conclusive evidence that AIDS could be transmitted by blood products, nor that the sterilised Factor 8 was safe. It transpired later that Professor Abe had received several hundred thousand dollars’ worth of assistance from Japanese pharmaceutical groups to establish a clinic.
The real reason the Government refused to act – and endangered the lives of hundreds more haemophiliacs – was to protect the local blood product industry, particularly the huge Japanese conglomerate Green Cross, according to investigator Hirokawa.
“The Japanese companies did not have the sterilisation technology, and if the ‘safe’ product had been allowed in, it would have given Baxter Travenol a monopoly of a $US50 million-a-year market,” he says.
In July 1985, the Government finally allowed the new product to be used in Japan, although there was still no recall of the infected batches of Factor 8. By then it was too late.
The first AIDS case in Japan was detected that month – not a homosexual or a drug user, but a hemophiliac. More cases followed, although doctors probably covered up more than they told.
Doctors lied to their patients, telling young men who did have AIDS they didn’t have the virus. They got it from the blood products the doctors had pushed on them for profit. Many are now dead or dying, as are their wives.
Even now, when the story has been convincingly documented in evidence given to the courts, the Government and the pharmaceutical companies are denying any liability.
The Japanese victims look enviously at cases overseas, where damages have already been paid, and – in one case – criminal prosecutions launched over the epidemic of AIDS that is sweeping the hemophiliac community around the world.
In Australia, the Melbourne firm Slater and Gordon has won a total of more than $100 million in damages for several hundred people who contracted the virus through blood transfusions and products. In Florida in January, a jury awarded a hemophiliac boy $US2 million in damages against a pharmaceutical company. In France, four government officials, including the former director of the national blood bank, have been sent to jail.
But in Tokyo the case drags on.
In the three years since it began, only four victims have given evidence, and two are now dead.
Next month, Plaintiff No 46 will give evidence from the hospital bed where he is dying of AIDS. His wife is about to become Plaintiff No 48; she has just discovered she is HIV-positive too.
“We will not be deterred,” says the HIV-positive Toshi Mitsui, who is as aware as his lawyer that Japanese court cases not infrequently take more than 20 years to settle. “My friends and I are determined to pursue them to the end.”
Pub: Sydney Morning Herald
Pub date: Saturday 17 April 1993
Section: News and Features
Sub section: Page: 24
Word count: 2171
Caption: Passport to reality … Japanese are finally getting the message that AIDS is not just an overseas problem.