TV & Radio
Japan's AIDS stigma strong, HIV-positive woman says
05 Jul 2005 01:48:09 GMT
By Elaine Lies
KOBE, Japan, July 5 (Reuters) - The young Japanese woman had just given birth to her first baby when her husband fell ill with a fever that would not go down. Soon after, he was diagnosed with AIDS -- and she found out she was HIV-positive.
Eleven years later, the stigma against people like her in Japan is still so strong that she will not reveal her name, her age, or allow her picture to be taken.
"I worry about losing my job, I worry about my daughter having trouble at school, I worry about trouble with the neighbours," the woman, who called herself "Nancy", told Reuters on the sidelines of an international conference about AIDS in the Asia-Pacific held in the western city of Kobe.
And even though she is a resident of the world's second-largest economy, giving her access to life-saving drugs, she feels her existence is at best grudgingly accepted by the very government whose health care system helps keep her alive.
"They seem to think that we have access to medical assistance, and that's enough," she said. "They are keeping us in care, but waiting for us to die."
Affluent, well-educated Japan may be one of the world's most advanced nations, yet it is also the only such country where AIDS cases have not dropped dramatically, a situation AIDS activists blame partly on prejudice against the disease and its sufferers.
"Everyone here thinks AIDS is a disease of foreigners, sex workers, gays, or people that really sleep around," Nancy said.
"There's also the idea that women who have it are promiscuous, even though the majority of those I know got it through encounters with their boyfriends."
She said she was unsure how she and her husband became infected.
"AIDS IS SCARY"
Fears about what might happen if their HIV status was known prevent many people from going to be tested, much less treated, meaning that many may be HIV-positive without knowing it.
Hospitals require people to give their names, and while public health centres offer anonymous testing, their hours are extremely limited and results can take a week.
"AIDS is scary," said a man in his 50s smoking a cigarette at Kobe's Sannomiya train station. "After all, it's very catching."
In 2004, there were 1,165 new HIV/AIDS cases reported in Japan, the highest annual figure yet and more than a tenth of all reported cases since 1985. Experts warn that the total could climb to 50,000 by 2010.
Nancy, a slender woman in her mid-thirties whose short hair is dyed a fashionable brown, said her diagnosis and that of her husband, who died six months later, were a "total shock".
Due to less developed testing methods at that time, it took her 18 months to find out whether her daughter, whom she had breast-fed for nearly two months, had been infected as well. It turned out that the girl was free of the virus.
"I considered suicide," she said. "But thinking of my daughter kept me alive."
Still healthy, she takes several drugs each day at a cost of 50,000 yen ($450) a month, which government insurance partially covers. She is too afraid to apply for a programme that would pay all her expenses since that would mean revealing her HIV status to officials in the small central Japanese town where she lives.
Her family and closest friends know of her HIV status, but not her daughter or co-workers.
"I'd hope that if somebody I worked with had AIDS, I would treat them just the same," said Mika Matsuo, a 27-year-old civil servant. "But I think I'd be a little scared even so."
Official apathy is blamed for much of Japan's situation.
AIDS has yet to be taken up by the Japanese government as a major political cause as it has in some Asian nations, such as Thailand, and AIDS policy is carried out by several ministries, rather than being centrally coordinated. AIDS education in Japanese schools is minimal and treats it as solely a medical problem, reflecting long-held taboos about discussing sex candidly despite Japan's booming pornography industry.
Nancy said the openness of her Asian counterparts about their HIV status at the AIDS conference, which ends on Tuesday, had inspired her to speak out about her situation for the first time.
"We, people with HIV/AIDS, have to make ourselves pro-active," she said at a news conference on Saturday, her first such experience. "That means we shouldn't just complain, but we should actively fight stigma and discrimination." ($1=111.62 yen)