Toshihiro Oishi is very lonely.
Oishi is one of only two self-acknowledged AIDS victims in Japan. Two others came out of the closet as well, but they have died, leaving Oishi and one other as the lone public symbols of Japan's 764 AIDS patients and 3,075 HIV-positives.
The young photographer, who contracted AIDS from blood products used to control his hemophilia, is nearly blind in one eye, the result of a cytomegalovirus infection. But he is still vigorous, devoting his free time to bringing AIDS awareness to Japan.
It is a difficult fight. "It is not easy for a person with AIDS or HIV to live in Japanese society," Oishi said. "Japanese society is still very far from being (empathetic) to persons with AIDS and HIV, as evidenced by the fact that, since my announcement (at last year's AIDS conference in Berlin), no Japanese with AIDS or HIV has made his or her disease known to the public."
Oishi addressed last Sunday's opening session of the 10th International Conference on AIDS. His talk struck a poignant chord at the meeting, which was marked by pessimism about the spread of the disease and a scattering of encouraging, if preliminary, scientific results.
During his speech, Oishi asked everyone in the audience who was HIV-positive or who had AIDS to stand. The group received a warm and sustained round of applause from the audience, which included Crown Prince Naruhito and Crown Princess Masako.
But behind this appearance of openness, observers say, is an undercurrent of fear and distrust, a bitter resentment of the "Westernized morals" that many Japanese believe lie behind the impending AIDS epidemic. A significant number of physicians in Japan refuse to treat AIDS victims, and many hospitals will not accept them, government officials acknowledge. "We have a proven history of extremely intense discrimination against AIDS," said Dr. Kenzu Kiikuni of Tokyo Women's Medical College. "That's got to change."
This contradictory attitude of public openness but private rejection of AIDS as a public health problem is typical of the Eastern response to the disease at the first AIDS conference held in Asia, experts say. Public health officials from throughout the region talk of educational programs, condom distribution and other proactive measures, but in private they deny that their countries are threatened.
"The denial here is as great as it has been anywhere else in the world," said Dr. Michael H. Merson, head of the World Health Organization's Global Programme on AIDS.
But the facts fly in the face of the denial. In the last 12 months, according to WHO, 3 million more people worldwide have become infected with the human immunodeficiency virus, which causes AIDS.
"The cumulative number of HIV infections to date exceeds 17 million worldwide," said Dr. Hiroshi Nakajima, director-general of WHO. "If the present trend continues, the figure will . . . reach 30 (million) to 40 million by the year 2000."
Asia will carry an increasing share of that burden. In the past year, the number of AIDS cases in Southeast Asia has risen from 30,000 to 250,000. Moreover, WHO predicts that the number of HIV infections in all of Asia--now about 2.5 million--could quadruple to 10 million by 2000.
The suffering from the disease will be economic as well as human. According to McGraw Hill, the New York-based publisher and information service purveyor, the epidemic could cost Asian economies up to $52 billion directly and in lost productivity through the end of the decade.
But that is "only half of the story," according to Dr. Arata Kochi, head of WHO's Tuberculosis Programme. "It gets a lot worse" when tuberculosis is considered in the equation.
Fully 30% of Asians--as many as 50% in some regions--are infected by the TB bacterium, but live their lives without becoming sick because the bacteria are trapped inside blood cells "like a cobra in a basket with the lid fastened on," Kochi said. "HIV is like an evil genie that goes around the body pulling the lids off all the millions of baskets."
An HIV-positive person who is already infected with TB is 30 times more likely to get sick with tuberculosis than one who is HIV-negative, he said. And each of those people who get sick, if not treated, will infect 10 to 20 additional people within a year.
"In Asia, the number of annual TB deaths in (HIV- and TB-) infected people is doubling every three years," he said. "We expect Asia to surpass Africa in the number of annual TB/HIV deaths by the year 2000."
Merson said: "We have a very narrow window of opportunity to prevent an (AIDS) epidemic in Asia and it is closing fast."
Perhaps the most pessimistic of all at the meeting was Dr. Jonathan M. Mann of Harvard University, who was the first head of WHO's Programme on AIDS. Even if all the envisioned educational and control programs were implemented in developing countries, he said, they would fail to halt the impending catastrophe because they do not take into account human rights issues, especially the rights of women.
Of the estimated 1.4 million people who contracted AIDS last year, more than a third were women, according to the Global AIDS Policy Coalition, based at Harvard University. Although HIV-infected men now outnumber HIV-infected women 3 to 2, according to WHO, the gap is closing and "equality" should be reached by the turn of the century.
And a cruel, ironic equality it is. Throughout the developing world, speakers said, women are subject to the whims of fathers, brothers, husbands and pimps, with no divorce or inheritance rights of their own. Men often feel no responsibility to the women--whom they view as little better than disposable property--and thus are immune to exhortations to use condoms and adopt other safe sex practices.
In Kenya, women are taught that when sex is not engaged in to conceive children, its purpose is to give pleasure to men, said Dorothy Onyango, a member of the International Community of Women Living With HIV and AIDS, a grass-roots network.
Although male promiscuity puts married women at risk, many Kenyan women are afraid to raise the subject of condom use for fear of embarrassing their husbands--or, worse, sparking suspicion that they themselves are cheating.
"With husbands, it's unheard-of to use a condom," Onyango said. "He will beat you, thinking you have been with someone else."
"Disempowered people are vulnerable," said WHO's Merson. "(Consider) the untold numbers of women who fear infection from their partner, but do not have the power to insist on condom use or the economic power to leave the relationship."
"No matter how hard we try, traditional public health programs cannot make up for the negative impact of this difference in societal status and realization of rights," Mann said. "A group of women lawyers in Uganda has convinced me that the first step in fighting AIDS must be to rewrite the divorce and inheritance statutes."
The plight of women extends to their children, growing numbers of whom are being orphaned or born with HIV. WHO estimates that more than 5 million children under age 10 will lose their mothers to AIDS before the end of the decade.
Because of the threat to children, one of the most exciting pieces of news at the conference, which ended last week, was the recently reported National Institutes of Health study showing that the anti-HIV drug AZT can reduce the transmission of the virus from infected mothers to children by two-thirds.
But Dr. James Balsley of NIH cautioned that the long-term effects of the therapy on the children have not been determined and that the success of the approach may drop as AZT-resistant strains of the virus become more common in the population.
"What we are saying today may not be true in several years," said Dr. Yvonne Bryson of UCLA.
But perhaps the most important roadblock to widespread AZT use in developing countries is the cost of the drug ($3,500 per year for regular use) and need to infuse higher levels of it during childbirth.
"(In the future), we have to make these treatments affordable and feasible," Balsley said.
Other, isolated bits of good news were scattered through the conference.
Dr. Paul Volberding of UC San Francisco reported findings that seem to resolve some of the questions that have dogged use of AZT. The bottom line, he said, is that AZT prolongs life if given after an AIDS patient's CD4 count--a measure of the health of the immune system--has dropped below 500 cells per microliter of blood. Administering it earlier, he said, provides no additional benefit.
Several other researchers reported encouraging results with new antiviral drugs, especially the second-generation versions of the so-called protease inhibitors. These drugs, which block an enzyme that is intimately linked to viral replication, are just now entering clinical trials.
"It's going to be a slow, evolutionary process," said Dr. Michael Saag of the University of Alabama at Birmingham.
"Under the best scenario, three years from now we may be getting excited by a certain combination of drugs," he said. But he cautioned that it would be more like eight years before scientists knew for sure if they worked effectively.
Dr. Anthony Fauci of the National Institute of Allergy and Infectious Diseases suggested that, in some cases, clinicians might be going in the wrong direction. While the focus of gene therapy, vaccines and other approaches is to bolster the patient's underactive immune system, he says part of the problem may be an overreaction of components of the immune system. If so, it might be more beneficial to suppress certain immune functions.
That approach was apparently supported by two papers presented by Dr. Jean-Marie Andrieu and his colleagues at the University of Paris. They reported that giving AIDS patients the immune-suppressing steroid Prednisolone in one study, and the anti-rejection drug cyclosporin A in a second, prevented progression of disease in small numbers of subjects. Twenty-seven patients who received cyclosporin showed no significant loss of CD4 cells during an average of 11 months of treatment.
Fauci applauded the results, but cautioned against a rush to use the drug. "There is a thin line between good and bad" immune suppression, he said, and it is not clear where that line is.
Researchers also drew hope from studies of so-called long-term survivors, people who have been infected by HIV for 10, 12 or even 15 years without developing full-blown AIDS. Such individuals represent less than 5% of the HIV-positive population.
Dr. David Ho of the Aaron Diamond AIDS Research Center in New York said there are at least two important factors in long-term survival. One is infection by a weaker strain of HIV--what Ho termed "a wimpy virus." The second is an unusual capacity of the individual's CD8 cells, a form of white blood cell, to control replication of the virus in the body.
Dr. Jay A. Levy of UC San Francisco said he is very close to isolating a protein from CD8 cells, called CD8 antiviral factor, which will hold the virus in check. Ho and other researchers said identification of this protein could be one of the most important developments in AIDS research to date. And in a move unusual in today's competitive research atmosphere, he called on funding agencies to give Levy more money.
Although some advances have been made in AIDS research, scientists are not yet close to a cure, according to Dr. Peter Piot, president of the International AIDS Society. He concluded: "Let us face the fact that AIDS is no longer an outbreak but has become endemic in many countries, and will be an integral part of the human condition for a very long time to come."