Written by Jun-ichi Ozaki / Translated to English by Sachi Kikuchi
March 1st is “Zero Discrimination Day”, as set by the Joint United Nations Program on HIV / AIDS (UNAIDS [* 1]). This announcement was made at the World AIDS Day ceremony held in Melbourne, Australia on December 1, 2013. Although the understanding of HIV [* 2] / AIDS [* 3] is increasing, the reality is that there is still a lot of discrimination and prejudice surrounding this illness.
Losing a Friend to AIDS
Let me start with a personal story. I have a friend who likely died of AIDS, and I learned about this about 5 years ago.
It happened when I was lucky enough to bump into a friend who I had been close with about 30 years ago. We were just casually catching up, when the topic changed with the words, “Speaking of which…”. “I’m really sorry about X.” I had no idea what they were talking about, so I asked, and found out that a mutual friend had died. When I asked, “If you don’t mind, can you tell me what happened?”, I learned that he had apparently died of AIDS.
The last time I saw him, he seemed really healthy. He was training at the gym, so it was hard to connect this memory of him with the fact that he had died of AIDS. I was confused and sad that I’d never see again.
HIV / AIDS Infections in Japan
I was already aware that I was a gay man in the 1980s. I’d like to think that I have some knowledge on HIV and AIDS. First, I heard about “a disease prevailing among gay men” in the United States, on the news. Many people in Japan may have heard of the so-called “pharmaceutical AIDS incident” that has been reported since the second half of the 1980s.
According to the AIDS Trends Committee of the Ministry of Health, Labor and Welfare, there were 903 HIV-infected persons and 333 AIDS cases reported in 2019, which means there were 1,236 new cases of HIV-infected persons and AIDS patients combined. The annual number of new reports of HIV-infected persons peaked in 2008, the annual number of new reports of AIDS patients peaked in 2013, and both are on a downward trend. Nevertheless, more than 1,000 new HIV / AIDS infections are still reported annually in Japan.
HIV is mainly caused by sexual contact. According to 2019 statistics, 15.5% of all cases are transmitted between men and women, and 4.9% of all cases are women. Needless to say, HIV is not just an illness that affects gay people.
Difference between HIV and AIDS
I wonder, how many people now know that with advances in medicine, HIV infection is no longer a terminal illness that causes AIDS and death?
I have a friend who is HIV-positive, but thanks to continued treatment, he is able to keep the virus load below the detection limit and live a healthy life. However, there are still many cases in Japan where people suddenly develop AIDS and die without realising that they are infected with the HIV virus, having not been tested for HIV either. They learn that they are infected with HIV after developing AIDS. In addition, it is feared that free anonymous tests at health centers are not possible during the COVID-19 pandemic, therefore reducing the chances of undergoing tests and increasing the number of cases of ‘sudden AIDS’.
In this situation, the biggest reason may be that the tests for sexually transmitted diseases (STD [* 4]) such as HIV are “not easily available” in Japan. There are many opportunities to get HIV tests overseas for free, and simple test kits are easily available. But in Japan, people can get HIV tests anonymously and free of charge at health centers once or twice a month at the most. In addition, if you try to get tested at a medical institution, you will not be covered by health insurance if you do not have any specific symptoms, and it is expensive. It is difficult to undergo HIV testing in Japan.
Prejudice and Discrimination Against HIV and AIDS is Still Alive and Well
In 2019, there was a case in which a job offer was retracted because the applicant “failed to disclose the fact that they were HIV positive”. In this particular trial at the Sapporo District Court, the defendant was ordered to pay a consolation fee. It was determined that there should be no discrimination on the grounds of HIV infection.
Some media articles about the trial said, “Because AIDS Virus (HIV) Positivity Wasn’t Disclosed”. It seems that Japanese news agencies are the source of this news because multiple media outlets published articles with the same wording, but the expression, “AIDS virus (HIV)” is questionable.
AIDS is diagnosed only when the immune function declines after being infected with the human immunodeficiency virus (HIV) and the development of one of the 23 complications (opportunistic infections) specified by the Ministry of Health, Labor and Welfare. In other words, this medical condition is considered to be the development of AIDS. From this fact, I think that the expression “AIDS virus (HIV)” should be corrected.
In the public relations magazine of the city, there was a guide called, “AIDS consultation / inspection window”, which was distributed in my area. In order to prevent the onset of AIDS, it is important to carry out an early examination, and if HIV infection is confirmed, appropriate medication must be taken. This kind of guidance is very important, but I felt uncomfortable with this expression. For the city, wouldn’t “HIV / AIDS consultation / inspection counter” be more appropriate instead of the “AIDS consultation / inspection counter”? I sent an email with this suggestion. A few days later, I received a message saying, “As recommended, we will make the change beginning with next month’s issue.” Even the government didn’t seem to properly recognize the relationship between HIV infection and AIDS, but I suppose I should appreciate that after my proposal, this change was implemented immediately.
<Before> AIDS Consultation/Testing, Syphilis Testing / Date: February xxx / Hours: 2:00-3:00pm / For: Those worried about infection (anonymous) / *Depending on the COVID-19 situation, this may be canceled
<After> HIV/AIDS Consultation/Testing, Syphilis Testing / Date: March xxx / Hours: 2:00-3:00pm / For: Those worried about infection (anonymous) / *Depending on the COVID-19 situation, this may be cancelled
I interviewed a friend who is HIV-positive, but continues to take medication and lives life the same way he did before he was found to be a carrier of the virus.
■ Name: Takeshi (Pseudonym) Age: 28 Gender: Cisgender Man Sexuality: Gay
VUJ: How did you discover that you were infected with HIV?
Takeshi: About four years ago, I suddenly got a high fever of nearly 40 degrees. It was the flu season, so I got tested but it came back negative. I couldn’t figure out the cause. When my friend asked me, “When was the last time you got tested for HIV?”, I realized it had been a while, so I asked my doctor to get tested, and found out I was infected with HIV.
VUJ: I’ve heard that early symptoms are similar to the flu and colds.
Takeshi: That’s right. I didn’t know that at the time, so I don’t think I would have gotten tested for HIV if my friend hadn’t recommended it to me.
VUJ: How long did it take to start treatment after you first found out that you were infected?
Takeshi: In my case, it took about 3 months. I first found out that I was HIV-positive at a general hospital, so I was introduced to a hospital that can treat HIV. I was then told that HIV treatments are very expensive and that I need to be certified as disabled. So, after waiting for the results of two HIV tests, I applied for a disability certificate and independent support for medical expenses. It wasn’t until after all of this that I could begin treatment.
VUJ: It still takes so long in Japan…
Takeshi: I heard that it’s faster than it used to be. Apparently, in some cases, treatment may not be possible unless the immunity drops below a certain level. It was scary for me to think about how the virus was spreading within my body while I waited for treatment to start.
VUJ: I heard that in the West, treatment starts earlier in part to prevent secondary infections after knowing about the HIV infection, but I think there are still many issues in Japan. How long did it take for the HIV virus to fall below the detection limit?
Takeshi: In my case, it took 3 months for detection limit in the test 3 months after starting the medication. I think it went well with the medicine. It seems that it may take more than half a year for a long person.
VUJ: Is there anything that has helped you cope since you found out that you were positive?
Takeshi: The friend who first recommended that I get tested. The same friend told me that even if I get HIV, as long as I keep taking medication properly, I can live the same life as a regular person. I also created a Twitter account anonymously. I was afraid at first, and I wanted to collect information. There are lots of people in the same situation as me, and it’s not just gay people. There are people with a variety of sexual orientations, and we all share ideas and encourage each other. Now, when someone who recently found out that they’re HIV-positive follows me, I send a message saying, “When it comes to this illness, I have a bit more experience than you, so let me know if there’s something I can give you advice about. If nothing else, I’m here if you want to talk.”
VUJ: Have you ever been discriminated against or prejudiced because you’re HIV positive?
Takeshi: The dentist refused to see me. I said that it was below the detection limit, but I was told that they didn’t have the equipment to treat me safely. I now go to a dentist that was recommended to me by the hospital where I am getting treated for HIV.
Apart from that, if you receive a disability deduction from your employer, when the time comes for the end of the year adjustment, they find out that you have a disability certificate. In my case, I also had depression, so I was told about the system of Independent Support Medical Expenses at the Psychosomatic Medicine Department. I had a mental disability health and welfare notebook when I applied, though, so I was already receiving disability deduction, but that notebook has an expiration date. I was contacted by my employer to confirm the expiration date, but I handed over the documents without commenting on the type of disability, and told them, “The type of disability has changed so there isn’t an expiration date anymore.”
I can’t think of anything else in particular. I mean, I’ve only told a small number of people that I’m living with HIV, and I’m worried about what people might think if they find out.
Oh, and life insurance. Obviously, the conditions aren’t as good. If I buy a house, I’m not sure what I’ll do about getting a mortgage.
VUJ: Is there anything else you’d like to tell the readers?
Takeshi: I want to tell them that they should be tested for all STDs (sexually transmitted diseases) on a regular basis, not just HIV. For yourself and for your loved ones. Apart from that, know accurate information and have safer sex! Because of course, the best thing is not to get infected at all.
VUJ: For men and women, unwanted pregnancies can be prevented with pills (low-dose pills: oral contraceptives), but STDs cannot be prevented with pills. It’s very important to use condoms correctly, to say, “I want you to use a condom”, and to say “YES” to them.
Takeshi: And one more. Even though it’s not well known in Japan yet, I hope that more people will learn about “U = U [* 5] (below the detection limit = no HIV infection)”. It’ll help eliminate prejudice and discrimination about HIV.
VUJ: Definitely, you rarely hear about “U = U” in Japan. The word “U = U” also needs to be better known in Japan. I want to eliminate discrimination and prejudice in society as much as possible, and to do that, society needs to have a better understanding. It’s important for each and every person in our society to raise awareness so that the words “HIV” and “AIDS” can be used correctly in the correct sense. I know some of these topics were very private, so thank you very much for talking with me.
<Notes> *1: Joint United Nations Programme on HIV/AIDS *2: Abbreviation for Human Immunodeficiency Virus *3: Abbreviation for Acquired Immunodeficiency Syndrome * 4: STDs = Abbreviation of Sexually Transmitted [Transmissible] Diseases * 5: Undetectable = Abbreviation for Untransmittable, meaning “HIV virus is not detected = does not infect”.
For details, see U = U Japan Project (https://hiv-uujapan.org/).
“AIDS = death sentence” is over. Sex and childbirth are possible with treatment even for HIV infection. Still prejudiced and discriminated against, experts are worried. October 31, 2019 HuffPost Japan version
Annual report on AIDS outbreaks in 2019 (January 1st to December 31st) September 15th, 2nd year of Reiwa Ministry of Health, Labor and Welfare AIDS Trend Committee
“Sudden AIDS” Has Increased. Health center where examinations were stopped in Corona. Call for consultation in the private sector. May 29, 2020 Okinawa Times + Plus
HIV discrimination is nonsense in hospitals It’s an era where you can work and live normally June 13, 2019 BuzzFeed
Compensation order for cancellation of offer, no HIV notification required, Sapporo District Court Nihon Keizai Shimbun September 17, 2019
Cancellation of offer is illegal “No need to tell HIV” Sapporo District Court September 17, 2019 Tokyo Shimbun
How do you say “get infected with AIDS”? 2009.07.01 NHK Broadcasting Culture Research Institute
International Bill of Human Rights United Nations Information Center
<Homepage of the organization that I referred to>