TV & Radio
Complacency gives AIDS a helping hand
Saori Kan / Daily Yomiuri Staff Writer
One day earlier this year, Chizuko Ikegami, a representative of nonprofit organization Place Tokyo, which provides support to HIV-positive people and AIDS patients, received a phone call from the Japanese Society for AIDS Research. "We would like you to become director of our annual conference next year. Are you interested?"
Ikegami had long been a member of the society, but it was the first time that a woman or layman had been offered the post by the society.
"I didn't take it seriously at first, as it seemed too heavy a task for someone who just represented a small, underfunded organization," she said with a laugh.
Despite her modesty, the 58-year-old woman is one of the best-known AIDS activists in the nation. Among other roles, she serves as a member of the metropolitan government's committee on AIDS-related problems.
In the end, Ikegami accepted the offer and her new role indicates that the society realizes the importance of providing support for people fighting HIV/AIDS.
Ikegami established Place Tokyo near Takadanobaba Station in Shinjuku Ward in 1994 when the International AIDS Conference was held in Yokohama.
The organization provides face-to-face or telephone counseling for people with HIV/AIDS. It also runs a discreet facility called NEST, located at an undisclosed location in Tokyo, where sufferers and their family members can meet and talk with others in a similar situation.
Place Tokyo also provides direct support at crucial times, dispatching "Buddies"--volunteer staff members--to assist hospitalized patients during days out from hospital. They also visit patients at home to help them with practical tasks such as housework.
Uniquely in Japan, Place Tokyo has surveyed AIDS patients on the problems they face, and published reports on the basis of their research. They have also published booklets aimed at raising public awareness of the need for AIDS prevention.
"AIDS is a disease anybody who has sex might contract. But it seems people can't think rationally when it comes to sexual topics. It's still difficult for people to talk frankly about the disease, even though more than 20 years have passed since it was first detected," Ikegami said.
Japan is the only developed nation in the world where the number of newly reported AIDS patients is still rising. The number of new HIV/AIDS cases reported in 2004 was 1,165, double that of 10 years before. This marked the first time since the government began keeping such records in 1985 that the number of new infections had exceeded 1,000. The cumulative total number of HIV/AIDS cases ever reported exceeded 10,000 last year.
The increase is caused in part by diminished public attention to the issue, many public health care researchers say. They say interest has fallen steadily since 1996, when the government and drug companies settled lawsuits with patients infected by treatment with HIV-tainted blood products. Over the same period, the so-called "cocktail treatment" that combines three different types of drugs has helped change AIDS from being a "death sentence" to what is often a chronic but manageable disease. This too has given many people the idea that AIDS is no longer a crisis, researchers say.
Ikegami got involved in supporting sufferers in 1982 when she studied sexology at Hawaii University after she graduated from Tokyo University. It was shortly after the first AIDS cases had been reported in the United States in 1981.
Learning from the confusion at some U.S. hospitals--some of which initially refused to treat AIDS patients--Ikegami's doctor colleagues at Hawaii University developed a system to ensure that patients in the region could get fair access to medical treatment.
One day, Ikegami was asked to serve as an interpreter for a Japanese-born man who had developed AIDS. The man wanted to return to Japan to see his family, and also planned to die in the country. But he decided not to, worried about discrimination faced by AIDS patients and their families.
After he told Ikegami that his ex-wife and son lived in Hawaii, she decided to help him to see his son one last time before his death. She arranged their reunion after discussing it with both the man and his ex-wife. Seeing his happy smile when he met his son, Ikegami decided that there needed to be some kind of systematic support for people fighting HIV/AIDS in Japan, too.
"Back then, I strongly felt that people with AIDS were considered 'guilty' while those without the disease were 'innocent,' even though anyone could catch the disease at any time. Something was wrong, I thought. So I wanted to do something to change Japan's society to one where I would feel at ease even if I myself caught the disease," she said.
According to Ikegami, the key to preventing HIV/AIDS from becoming endemic lies with convincing young people to take the threat seriously, since they are becoming ever more sexually active. According to a 2002 study conducted by a teachers' group in Tokyo, in 1984 about 10 percent of third-year high school girls had had sex. That rate has now reached 46 percent and it's a similar story with boys. Over the same period, the percentage of sexually active third-grade boys has risen from 20 percent to 37 percent. Another study, conducted by Masako Kihara, an associate professor at Kyoto University, shows only 40 percent of high school students use condoms when they have sex. It also shows that they tend to change sexual partners more frequently.
"To prevent them from getting infected, adults shouldn't try to avoid talking about sex with their children. They should ensure that their children have the right information to allow them to have safe sex, including knowing how to use a condom properly," Ikegami said.
Fidelity is no guarantee
To promote public awareness about the sexually transmitted disease, some people fighting AIDS have begun talking about their experiences.
Shoko Kitayama, a woman in her late 30s who lives in the Kansai region and works as a local government official in charge of community welfare, was told that she was infected in 1996, just as she was ending a two-year mission as a volunteer public health nurse in Tanzania. She was dating a local man at the time.
"I have to say it was careless for a public health professional to have sex without using a condom. I was just one of those people who thought AIDS would never happen to them," said the slender woman with wavy hair in an interview at her home.
"I really loved the man, and he was the only man I was dating. But it seems many people still believe they will be safe if they have sex with only one partner. I want to say that love and fidelity are no guarantee of safety from HIV/AIDS," she said.
"The number of women found to be HIV-positive during pregnancy health checks is increasing. The rate among pregnant women was 3.61 per 100,000 in 2004," said Shinya Iwamuro, an urologist and official at the Japan Association for Development of Community Medicine. "Many of these women are married and contracted the virus through their husbands."
The doctor has the nickname "Mr. Condom" because of his devotion to educating students about how to use condoms correctly.
Last week, Kitayama, who has published a book Kamisama ga Kureta HIV (HIV--the Gift from God), gave a lecture on her experience at a public middle school in Yokohama.
"Whenever I talk to young students, I tell them that the virus doesn't care how honest people are or how many people they are dating. Sexual morality doesn't matter in terms of protecting yourself from HIV/AIDS and everyone who wants to have sex, including adults, of course, should be aware of that," Kitayama said.
"HIV/AIDS is now manageable with the cocktail treatment. But it still takes a lot of determination to fight the virus and the treatment is very expensive. I want them to know that."
To combat HIV/AIDS, the government is encouraging people to be tested for the virus. However, only 68,774 people were tested last year, barely more than half the 135,674 tested in 1992. What makes people reluctant to have the test is the inconvenience of the testing system. At many public health centers, AIDS tests are available only at fixed times on weekdays, and examinees have to visit the center a second time to get their results. As an option, some public health centers have introduced simpler one-day testing system or begun providing services at night or on holidays.
Nor are tests the whole story. "It's meaningless to only provide AIDS tests," said Hiroshi Hasegawa, representative of JaNP+ (pronounced "jump plus"), a Tokyo-based organization that represents those living with HIV/AIDS.
Hasegawa contracted the virus through homosexual relationships.
"I know some people who have tested positive for the virus, but then didn't immediately see a doctor. One of them didn't go to the hospital for about two years. We need to be more systematic in providing follow-up services."
(Nov. 26, 2005)