Despite advances in treatment, the number of newly confirmed cases of HIV in Japan has remained flat for the past decade, a sign that misconceptions about the disease are making progress toward eradication difficult.
“The stigma around HIV is the reason that we can’t end it. In many places, people are still afraid of HIV or afraid of people living with HIV. We need to be clear that that idea is old, that is 30 years old,” Owen Ryan, executive director of the International AIDS Society, said on a recent visit to Japan.
Ryan, whose group of doctors, nurses and researchers is working to eliminate AIDS, called for more self-testing.
“In Japan, the key is finding (those) who aren’t tested,” he said. “When people know their HIV status, they tend to go get treatment. So self-testing is important.”
Japan is the fifth-largest donor to the Global Fund to Fight AIDS, Tuberculosis and Malaria, an effort it helped establish. The fund is the largest multigovernment funder of HIV programs, with more than $4 billion a year according to Ryan.
Despite the country’s efforts on the international front, newly infected HIV sufferers at home totaled 1,407 in 2017, only slightly lower than the previous year, with one-third showing symptoms that indicate they may have progressed to the third stage of the disease (AIDS), preliminary data by the health ministry showed. In 2016, the number was 1,440, slightly up from 1,434 in 2015.
The latest data also reported three cases of mother-to-child infections, the first recording of multiple infections of that kind in three years, prompting the government to call on pregnant mothers to make sure they get health checkups.
In the fight against AIDS, the ministry started a subsidy program from April in some municipal areas in Japan where workers will be able to be tested for HIV for free as part of their health examinations. Public health centers nationwide also offer free, anonymous HIV testing, but that’s only available on weekdays.
Self-testing is not sufficiently practiced “because people are scared,” Ryan said. “In Japan, new infections are (largely) among gay men and so you are already stigmatized because you are gay and people feel like it’s a double stigma. I think getting (more people) tested happens by attacking that stigma,” he said.
“With a bit more work and more money, Japan really could be one of the first countries to end AIDS,” Ryan said.
A public survey conducted in January by the Cabinet Office showed that 52 percent of the respondents still believed AIDS is an “illness that leads to death,” although advances in drugs used to treat the disease have allowed HIV patients to live as long as nonsufferers and also have substantially lowered the chance of transmitting the disease to others.
The poll, which drew responses from 1,671 people over 18 years old nationwide, showed 34 percent of them think the “cause (of AIDS) is unknown and untreatable,” while 20 percent called it “an illness that only affects specific people.”
As for the origins of infection, some respondents were completely misinformed, with 25 percent believing that “mosquitoes were carriers” of the disease, and 17 percent saying it could be transmitted by “light kissing.”
Only half of the respondents knew that anonymous, free testing is offered at public health centers.
Another online survey conducted by HIV Futures Japan Project, an entity comprised of people infected with HIV and researchers of the disease, also showed that those with the disease are tormented by the stigma associated with it.
In the poll, conducted on some 1,000 people in Japan infected with HIV in 2016 and 2017, about 93 percent said they are “very careful” when they talk to someone about being HIV positive.
More than 85 percent also said that, in general, when people learn they are HIV positive, they deny it, while nearly 63 percent feared losing their jobs if their employers discover they carry the disease.
The survey also found that HIV patients tend to put pressure on themselves, leading some to suffer from deteriorating mental health.
Over 64 percent said that they lie about their condition if HIV comes up in a conversation, while nearly 66 percent said they continually try to ensure their HIV positive status is not discovered by people around them.
While acknowledging the difficulties in tackling the issue in an environment like Japan where AIDS is still taboo, Ryan warned that stopping the conversation or failing to educate young people about it only serves to reinforce the stigma.
He cited the cases of Eastern Europe and Central Asia where new HIV infections rose by 60 percent and AIDS-related deaths in the region increased by 27 percent between 2010 and 2016, while globally, new HIV infections and AIDS-related deaths have actually fallen in the same period.
“It’s a great example of, when you stop talking about it, educating about it, it keeps coming back,” Ryan said.
UNAIDS, which works closely with the International AIDS Society, aims to eliminate the AIDS epidemic by 2030.
Its ambitious project takes the so-called 90-90-90 approach: ensuring 90 percent of the infected are diagnosed, getting 90 percent of those who are diagnosed on treatment with antiretroviral drugs, and having 90 percent of those infected attain viral suppression.