No Ordinary Survival Guide:
Notes on HIV, Hope and the JET Programme
The following is a personal narrative of a JET Programme participant who was diagnosed with HIV/AIDS during their tenure on the program. While it is unlikely that the author is the only HIV-positive JET participant in the Programme’s history, this may be the first attempt to fully document the experience of remaining on JET long-term post-diagnosis, and navigating treatment as a foreign resident with JET Health Insurance.
Making the Decision
I chose to have an HIV test done while I was traveling outside of Japan, though I was well aware that testing for HIV and other STDs could be done in my prefecture and even in my own town (www.hivkensa.com) However, I chose to have a test done outside of the country for several reasons:
Living in a rural Japan and not wanting to have an HIV and STD test done locally would mean going to a large city, which would mean having to take time off of work, which I feared, might arouse (natural) curiosity and people might ask questions about why I was taking time off.
The language barrier.
Having my test done in an English-speaking, western country, meant I could go by myself, understand what the test entailed, ask any questions I may have and not have to risk being faced with a situation where I would need to have someone translate for me. For me, I felt very strongly that this was something I needed to do by myself.
I needed some peace of mind knowing that this test was taking place in a location far from anyone in Japan who might know me. Not only is my local, Japanese community tightly knit but the local JET community is as well, and I wanted to be sure of privacy.
At the testing location I visited, I had a rapid test done using the finger-prick method. It came back as positive and I was given the option to have a confirmatory test done free of charge. I would, however, have to go back in person to get the results, which would take about a week to come in. My departure back to Japan was coming up very soon and I couldn’t re-arrange my travel dates, but I arranged to have an e-mail sent to me when my test results were in and I then I would call via Skype to receive the results. As the rapid tests are very accurate these results also came back positive.
Stay or Go?
After finding out that I was HIV positive I had to do a lot of hard thinking, and in the end narrowed my choices down to the following:
Ignore this entire nightmare and carry-on with my life.
Break my current JET contract and leave Japan ASAP.
Finish my current contract but pull out of my contract for the following year, and leave Japan (I had signed my re-contracting papers a couple of months earlier).
Finish my current contract and stay in Japan for an additional year, as I had agreed and planned to do.
I did a lot of research online to try and determine what would be the best course of action for me to take. I tried to find out as much information about what the virus meant for me physically, mentally, emotionally and financially, etc. in the short and long-term. It was time-consuming and exhausting in every sense of the word.
In the end I decided to complete my current JET contract and stay in Japan for the next JET year as well. My rationale being that if I left Japan, I would have few options for places to go. If I went home I would be unemployed, uninsured and face a lot of questions from family and friends as to why I chose to come home so quickly (nobody knew that I had even gone to have an HIV test). I also figured that I was at least financially more stable here in Japan and had the added benefit of the National Health Insurance (NHI) to help pay for treatment, should I need it.
Seeking Treatment in Japan
After deciding to stay in Japan, I decided that I had no choice but to approach my PA about my situation. Together we considered options and, my PA did some research on my behalf as to what one should do if they think they are HIV positive and living in Japan. We discovered that the first thing I needed to do was have another HIV test done in Japan. Since I received my results over the phone I didn’t have any documentation, which could have saved me from having to be re-tested. Again, I faced the choice of getting tested locally or going outside of my area to get this done. When faced with the terrifying prospect of being tested locally, I chose to seek medical attention outside of my area. As a side note, I had faced some issues surrounding privacy earlier when I was hospitalized and since then had become very wary when it came to the preservation of my privacy in my town.
In considering my options for being treated in-prefecture or out of prefecture, I took into account logistics, money, time, and the prospect of having to try and navigate the medical system in Japanese and by myself at times. In the end I chose to go to the National Osaka Medical Center. My primary reasons being:
It was far from my JET placement location.
I could be seen on the weekends, which meant I wouldn’t have to take paid leave.
It is one of the most well known institutions for treating people with HIV in the region.
Since this hospital serves a very large and diverse population, I hoped my chances of finding someone who could communicate with me in English would be increased.
First Hospital Visits
When I went to the hospital for the first time, I went by myself. I wanted to go by myself. With the help of my PA, I knew which section I needed to visit, what I needed to ask for and how to ask for it. Before that could happen I had to register at the hospital’s main reception area using my NHI card and (I think) my Foreign Residents’ card as well. I was given a credit card-like ID card (this is normal for larger Japanese hospitals) and directed to the appropriate department where I could have an HIV test done.
Before having my test done, I had a short one-on-one counseling session with a nurse. In this consultation I was asked questions similar to when I had my anonymous test done. There were questions about my personal health history, my family back ground, my sexual practices, etc. I was also given the opportunity to ask any questions I may have. I did this in Japanese as the nurse didn’t speak much English, but she was very kind. After the test was done I was told the date I needed to return to the hospital and receive my results.
About a week later I went back to the hospital to receive the results of their test, and spoke with an HIV specialist. He shared my (still positive) results and told me that they would draw more blood that day in order to see what my viral load was (amount of HIV virus in my blood), what my CD4 was (a certain type of white blood cell that helps fight disease and infection and is used to determine the strength of the immune system), as well as check for other STDs, liver problems, kidney problems, etc.
After I had finished speaking with the doctor I went into a second consultation with the nurse I had spoken with on my first visit. I was given some information about a telephone hotline, counseling for myself, family and friends, tips for good nutrition, staying healthy in general, support groups in the Kansai area, etc. These were all in Japanese and the only resource they had for English-speakers was the CHARM (an organization) telephone hotline. Again, the nurse was very kind throughout the whole time. Before leaving I was given a phone number that would connect directly to the clinic that handles infectious diseases, and told that I could call anytime if I had a question or if I became suddenly ill. I confirmed a date for my next appointment, which was a couple of weeks later.
For both of these trips I had to go to the hospital on weekdays. I was able to get some lucky breaks in my work schedule and the people at the hospital were very helpful and understanding about my scheduling challenges, need for discretion and were very willing to try their best to find a date that worked for me.
When I went back to hear the results of the second round of blood tests, I brought a friend with me. I was very apprehensive about hearing the results and in the weeks leading up to this third appointment had been doing copious amounts of research online. I poured over message boards and blogs for hours on end, which filled me with a mixture of painful numbness and despair, topped off with an unhealthy dose of terror. This is the only time I’ve ever wanted someone to accompany me.
I was clinically diagnosed with AIDS, and the doctor strongly advised I begin highly active antiretroviral therapy (HAART, colloquially known as the “AIDS Cocktail”) immediately. We talked a little about other options of where I could seek treatment, as the trip to Osaka is not cheap and very time-consuming. There are options for treatment in each prefecture in Japan, however at the end of our conversation I decided to continue receiving treatment at this hospital in spite of the distance and cost.
That same day I was taken to a small room and given medicine through a respirator-humidifier kind of machine that was supposed to help protect my lungs against air born bacteria (this is a normal precaution in Western countries as well, though it might be carried out in a different manner). These treatments would continue until my CD4 rose above 200, which after starting HAART took a little over 2 months for me. Different people respond to treatment at different rates.
That afternoon I spoke with a pharmacist who knew awkward English, but I could tell he meant to be kind. I had a hard time understanding what he wanted to say and had to ask him to speak in Japanese. We discussed options for HAART and suggested I think about my options and make a decision by my next appointment. Before I left the clinic more blood was drawn and I scheduled an appointment to return two weeks later.
Before leaving I also met with a social worker at the hospital who spoke wonderful English and we had no problems in communicating, which was a huge comfort and relief. I was presented with some information about what my medical care would cost me and what kinds of financial assistance I could be eligible for depending on the results of my next round of blood work.
Getting into the System
After my appointment a couple of weeks later I went back to hear the results of my latest round of blood work and meet with the social worker I spoke with initially. From that time on she became my social worker, which has been great since she speaks English. From the results I found out that I was eligible for a level 2 disability on a scale of 4, with 1 being severely disabled and 4 being mildly disabled. This qualified me for a very good financial support program. The process to become enrolled was as follows:
I wasn’t completely sure how the NHI worked in general, but here’s a simple breakdown: the NHI bears 70% of the cost of medical treatment and the patient bears the remaining 30%. In order to be receive additional assistance with the 30%, I needed to apply for 2 things:
1. 身体障害者手帳 （しんたいしょうがいしゃてちょう）
“Physical disability certificate” but it’s actually a little passport-like booklet.
This helps support the disabled individual in their daily life. There are 12 kinds of disabilities covered by this certificate, and HIV/AIDS falls under 免疫機能障害（めんえききのうしょうがい）, or immunodeficiency syndrome. The levels of disability range from 1-4, with 1 being severely disabled and 4 being slightly disabled. Depending on the level of disability, people who have this certificate are eligible for discounted or free services ranging from public transport and airfare to and utilities and tax breaks. If one is eligible for any services or discounts, they need to present this booklet at the counter or to the service representative who is helping them.
In order to apply for this I (as an HIV patient) needed:
I provided my social worker with information (residence in Japan, Foreign Residents’ card, etc.) and she completed the application for me.
This required the results of 2 blood tests done within 4 weeks of each other (I mention this only because of the set time period). The hospital took care of all this.
Once those materials are compiled, they’re sent to the town or city where the patient lives.
2. 自立支援医療 （じりつしえんいりょう）
Medical expense support
This system is one of the benefits of the physical disability certificate. You cannot receive this support if you don’t have the disability certificate.
After applying, the upper limit of your monthly medical fee is decided by your income. For example, if it’s decided that your upper limit is 10,000 yen, regardless of how many times you receive medical treatment in one month, you won’t have to pay more than 10,000 yen for that month.
In order to apply for this (as an HIV patient) I needed:
I provided my social worker with information and she completed the application for me.
The hospital took care of this.
Copy of medical insurance
If I remember correctly this was just a photo copy of my NHI card.
Letter of attorney
If I remember correctly this was to give my consent and allow my social worker to submit the application and receive documents on my behalf.
Consent form to allow my tax status to be checked
This didn’t apply to me. I don’t remember why exactly but I think it had to do with a different kind of tax, like an inheritance tax or something like that.
**Note about the physical disability certificate and medical expense support
I found this application process extremely hard to deal with. The reason I chose to be seen at a hospital in Osaka was to keep everyone in the dark about my HIV and the prospect of having to expose all that information about myself to people in my own town was terrifying. To make things worse, while my disability would be listed as, “immunodeficiency syndrome” it’s widely understood to mean HIV, and not a hereditary problem (though that could be the case for some people). My social worker was very patient with me and assured me that she really did believe that the people in the General Welfare Division (the section that would process my application) of my town office would respect my privacy. I wrestled with this decision for weeks and asked a lot of questions. I even asked her to call my town office and find out the names of the people working in that division (as they’re public employees this was possible) and she kindly did so. I was afraid that one of them could be a parent of a student.
In the end I decided that I had little choice but to apply for the disability certificate because I needed the medical expense assistance. One month’s doctor visit, blood work and medicine cost me about 90,000 yen (that’s the 30% of the bill that the patient bears). Keeping in mind that I had to add on an additional 10,000 per trip to reach Osaka, and since I was being seen on Saturdays at this point, I had to stay the night in the Osaka because clinic hours were only in the morning and it would be impossible for me to reach the city even if I left on the first bus or train heading out on Saturday morning. In total, each month it would cost me about 105,000 yen for treatment.
After consulting my PA and examining my JET contract, I decided to wait until my new JET contract began before applying for the disability certificate. I was afraid that my BOE would find out through the grapevine that I had HIV and had advanced to a point where HAART was necessary and my upcoming contract would be revoked. Since the new contract hadn’t come into effect yet, it would be possible for them to do so and not need to provide any reasons. They could not, however, release me from a contract in effect without a valid reason. So in other words, once my new contract started I would be safely employed for another year.
Due to some events in my town and work situation I decided it best to wait an additional month into my new contract before applying, and in the end paid the 105,000 yen each month out of pocket for 5 months. This was challenging on many levels.
I applied for my disability certificate in early October and received the booklet and medical expense support paperwork and booklet by late-October/early-November. I am at a level 2 disability and the upper limit for my monthly medical bills is 10,000 yen. This has been a tremendous help.
As a side note, it’s my understanding that if you take advantage of this disability allowance, you are unable to receive any pension refund when you leave Japan. But to be honest, it is most likely that your pension refund will be less than the benefit you receive from the disability allowance.
Where I Am Now
I’ve now been undergoing HAART for just over 1 year and things are going well. I had a lot of concerns about possible side effects, but fortunately I haven’t had to deal with anything I can’t manage by making some “better” lifestyle choices. My viral load has dropped to undetectable and my CD4 count has been slowly climbing. Once my CD4 passed the 200 level I was able to stop going to see my specialist so frequently. Now I go every 3 months and am able to get a 3-month supply of medicine at a time, which is the max that is allowed in Japan. I have found that at the hospital I go to, there are even doctors in the infectious disease department who speak fluent English, which came as a complete surprise. Unfortunately, as I go on Saturdays, I can’t really request that any of them be my specialist since they don’t have office hours on the weekends. HAART Therapy in Japan adheres to world-wide standards for treatment, and I have made sure to choose a course that can be continued seamlessly upon my return to my home country.
In my town, things have gone well in the sense that nobody has treated me differently that I can tell. I’m very thankful that all my paperwork can be processed through my social worker at the hospital in Osaka. My social worker has indeed been a (if not THE) key player in many events. If I didn’t have her assistance I wouldn’t be in Japan right now. There is no way I could’ve navigated the system without her help.
Musings on HIV and JET Life
Finding out you have HIV is devastating.
The first few months were an absolute nightmare and emotional rollercoaster. I am not a very emotional person (or so I thought), but I suddenly found myself having to make quick escapes to my car during the school day and cry my eyes out. I hadn’t felt some of the emotions I was feeling at that time in a long time, if ever: intense anger and hatred even, true despair, intense loneliness, resentment, etc. and sometimes an utter lack of feeling. I remember sitting in my chair watching the shadow of the tree outside my window cross the room. Hours of just sitting and not feeling. Some days felt “normal” and others were excruciatingly hard. Some days the future seemed quite bright and others I would curl up, cry and plead that this was all a horrible dream and that I would wake up any moment. Having to maintain a cheerful and social persona at school, in my local community as well as the JET community was exhausting. I’m a pretty social person and I feared that if I changed any of what people were used to seeing would raise suspicions and red flags. For a long time I felt very numb when around other people and found it hard to be sympathetic to anyone else’s problems or challenges. Not out of self-pity or a feeling of superiority, but I just had a lot of other things that were going though my mind at the time. That was hard; putting on a show of sorts was very hard and it took months for me to get to a point where smiles and laughter weren’t forced. At one point I was struggling to control a paranoia that had started to affect me in negative ways, and more than a few times I thought I was losing my mind. I mention this just in case there’s someone else in a similar situation thinking, “I am the only one who has ever gone through this as a JET,” as I had. I wondered if I had made the right decision at times. I wondered if what I was feeling was normal. I wondered if I was a bad person for doing what I was doing to keep going. It was a very challenging time. I mentioned this stuff just incase someone else feels or has felt the same way: it’s normal. It’s part of the process. Oh, the grieving process. Kubler-Ross and the grieving process. I can say that I experienced it at that point in time. Heck, there are still times when I think I’m going through it now!
After I heard the results of my first HIV test, the clinic staff member asked, “Do you have a plan?” I was so upset and shocked. In my mind I screamed, “Of course I don’t have a plan! My future family, the children I want so badly, my spouse, my dreams and aspirations were just incinerated (or so it seemed at that time) and you ask me if I have a plan!?” Though it felt like I had no more plans whatsoever, I actually did. I had arranged to meet someone for lunch and someone else for coffee that evening. Before I left the clinic I made a promise to call one of the staff members when I’d finished up my day and was in a safe place, just to check-in and see how the rest of the day went. In retrospect, I think those small plans kept me from doing something unwise. During the very hard times, a case manager, a wise friend and others have asked me, “Do you have a plan?” Sometimes I didn’t. I remember one time just crying and crying and all I could answer was, “I just want to go home.” I did. I went home and I slept for almost 14 hours (which is unusual for me) and that’s what I needed at the time.
Building a Support Network
I think regardless of where you are, during a challenging time like this you need a support network. I eventually confided in three very good friends here in my part of Japan. I spoke with them individually and they were made aware that the other two knew about what I was dealing with as well. In retrospect I can see how at times they coordinated, so to speak, and keep tabs on me. I knew I could call them at anytime of day or night, I knew I could cry and it would be OK and I knew I could talk and they would do their best to just listen. In this day and age you can connect with others experiencing the same things you are though they might be on the other side of the globe. There are now different ways of finding support, but what I needed was support from people I could see, touch and trusted. I think particularly that if you’re going to continue on in Japan, in this job, knowing what life is like as a foreigner here, you really need to consider the support aspect very carefully. I would dare say that if you have more support at home, then maybe you should seriously consider addressing this situation there. I don’t know. Everyone is different, but if I didn’t have those friends here I don’t know what would’ve happened later on down the road.
I've found that people who find out about your having HIV will probably need to talk with someone else, and that someone else is probably not going to be you. A couple of the friends that I confided in later told me that they had spoken with another 3rd party about it: parents, a spouse, a religious elder. In my case these were all people well outside of my sphere of contact. At first I was a bit freaked out and slightly upset about this, but upon further consideration I think this was part of their processing the news I had told them. Telling someone you have cancer is different than saying you have a currently un-curable, highly-stigmatized, condition. You can talk freely, even with a stranger, about all types of cancer, but HIV is still different. This might not be true for everyone, but that's what I've realized in my experience. That being said, you should carefully consider who you tell.
Support groups in Japan are out there, but they’re not really aimed at supporting foreigners, or they’re not easily accessible unless you live near a major metropolitan area, and then there’s the language barrier. I don’t think they’re meant to be exclusive, but Japan isn’t an English-speaking country. It’s also not a western culture. The ways people deal with challenges and hardships here are not necessarily different than in other countries (we all know the feeling of sadness, happiness, hope, love, etc.), but the way in which these are dealt with is not the same either in all cases (in my humble opinion).
I haven’t knowingly spoken with a single other person living with HIV since I’ve been diagnosed. I see people in the hall of the infectious diseases section of the hospital and can only assume that some of them have HIV, but I can’t know with any certainty. It could be very similar in someone’s home country as well, but I think that if you plan on staying in Japan as a JET, etc. and are newly diagnosed with HIV, you should be prepared to have to turn to the Internet for support or go solo, as I have. Not a bragging point at all--My personality is just not one that feels comfortable turning to a message board for a lot of support. A part of me is looking forward to talking with someone else who has HIV when I go home. The time since I was diagnosed has been lonely in a way and there’s still a part of that feels isolated. I’m hoping to be able to address this after I leave Japan.
HIV and Finances
Consider your money situation carefully. I was sending money home on a regular basis but for several months leading up to my diagnosis had been putting away quite a lot in my Japanese bank account with the goal of traveling for a year post-JET. By the time I received my disability assistance I had used all of that savings up and was quite literally living paycheck –to-paycheck. If I were to feel like I had to leave Japan abruptly I wouldn’t have left enough in my bank account to cover my bills upon leaving. Money was very stressful for a time. I could’ve sent money from the states to Japan, but the exchange rate wasn’t good and I felt I needed (need) that for when I make the move home and have to contend with paying for meds, doctors visits, etc.
Unexpected Challenges, and Moving Forward
One thing I hadn’t expected was the not knowing how I got it. After thinking for a while I felt I needed to try and contact some people who I’d been intimate with because I wish someone else had told me if they knew. After getting diagnosed I made some rash decisions and deleted e-mail and social networking accounts, so in the end I could only contact a few people. I thought I knew for sure who had “done” this to me, but it turns out none of them were HIV positive. This too was hard. Very, very hard. Not knowing is hard and forced me to consider some other possibilities that are painful to remember. After that initial round of telling people I decided that for me, I couldn’t pursue this part of my HIV anymore while I’m here in Japan. It’s too hard and even with the friends I have, I need a different kind of support system. I’ve decided that for me to continue to function here, that box needs to stay closed for the time being. I got over the initial pain of wanting to know and then not knowing, but part of me worries that if I were to find out now, that would just be too much to deal with at this point in time. I think that’s OK, because it’s what I need to do. That to say, you ultimately need to do what you think is best for you.
You’ll have good days and bad days just like every other person on the planet does. Just like dealing with culture shock! In the beginning you’ll probably have many bad days, but eventually you’ll have more good days than bad days, and hopefully you’ll find that the good days far outnumber the bad. That’s proven to be true for me. Be generous with yourself. Be kind to yourself. Give yourself time and space. Life is going to go on and sometimes I had to tell myself to hold on just until tomorrow, because things seemed a little better after sleeping.
Things are much better now. I can smile and laugh again. I can enjoy being around my students and co-workers and I can enjoy my job again. I needed a change after finding this out and it was perfect that I was already scheduled to change schools in the new JET year. If I had to stay at my old school and in my old community, I think I probably would’ve gone home. It was just too hard and I needed a change. That was one thing that kept me going sometimes: the thought of a “fresh” beginning.
“100 Questions and Answers about HIV and AIDS.” I bought it off of Amazon and it’s been incredibly helpful. When I told my parents I ordered a copy for them and sent it to them without telling them beforehand. It’s that good.
There are a fair number of resources and organizations out there who deal with HIV/AIDS and STIs, however, many are in Japanese. For all of these websites listed below you can find a links page with many more resources available, but the overwhelming majority will be in Japanese, or provide no updated information in English.
CHARM (Center for Health and Rights of Migrants)
CHARM is based in the Osaka area and offers services and support for the foreign community living in Japan.
Multi-lingual Telephone Hotline (English, Spanish, Thai, Filipino and Portuguese)
We provide consultation for people living with HIV (PLH), etc. in different languages. You can inquire or consult about HIV and other sexually transmitted infections (STI), testing and treatment. These services are free and confidential.
Tuesday 4:00 to 8:00 p.m. English, Spanish and Portuguese
Wednesday 4:00 to 8:00 p.m. Thai
Thursday 4:00 to 8:00 p.m. English, Filipino
HIV Support Line Kansai (Japanese)
Telephone consultation service for PLH, their families and partners.
Mondays and Wednesday 7:00 to 9:00 p.m. (except national holidays)
I called the CHARM, English hotline and it was a little different that what I had expected. I believe volunteers in their own homes man the line, as the phone was answered in Japanese (moshi moshi) and I could hear children in the background. The lady I spoke with was nice, however English was not her first language and there were some slight hiccups in communication. I had expected something more official or professional--maybe a bit more like PSG or TELL, perhaps--but the volunteer did her best and I don’t hold anything against her.
I called with a fairly technical question about how to find a loophole in the healthcare system and be able to get disability benefits without anyone in my town’s yakuba knowing. In the end it turns out this is not possible, but I found this out from my social worker at the hospital I go to in Osaka.
Life Tokai (open to all)
Website in Japanese, but English webpage available.
A group created specifically for people living in the Tokai area, however, there is an English page on the group’s website, and the representative (public face) of the group has spent time living in the states. He stated that he understands how challenging it can be to live in a different culture/country and have to deal with a personal challenge on top of that. I think he could be a good resource even for those living outside of the Tokai area who need to get connected with others and/or services using English. E-mail: .
HIV Testing and Consultation Map (HIV検査相談マップ)
This website allows you to search for places to get tested by region and prefecture via an interactive map. A more detailed search is also available where you can search by train line, office hours, etc. There is also a section listing opportunities to get tested, listing the date, time, location and in some cases even whether HIV rapid testing is available (which is kind of a rare thing as often times in Japan you need to go back in person to get your results).
Though the website is all in Japanese, I feel like this could be a good thing to have as a resource. Also, if you’re desperate, you will use Google translate, your pocket dictionary, your cellphone dictionary, Rikai-chan, etc. in order to understand what you need to. I suppose this goes for many of the resources online out there regarding this topic.
Japan HIV Center
English website available.
This organization is based in Tokyo but offers info on HIV/AIDS, STI and safer sex phone counseling in English:
Saturdays, 12noon – 3pm
This organization also has branches in major cities across Japan, offering support and services to those living with HIV.
English language website.
Possibly the most comprehensive, English language website out there offering information on HIV/AIDS. This website is an invaluable resource for everyone and anyone who has questions about HIV/AIDS or whose life has been touched by the disease. It offers information for those who are afraid they’ve been exposed (or have been exposed), the newly diagnosed, those who are living with the disease and have questions, how to deal with family and friends, etc. For someone who might be unable to speak/understand Japanese fluently, this is a great way to get educated about what HIV/AIDS means and what options are available.
I have spent hours on this website, especially after I was newly diagnosed. I don’t know what I would’ve done if I hadn’t been able to access this resource.
Phone counseling is available in Japanese only, as far as I can tell. Those phone numbers are listed on the pTokyo homepage.
When first tested positive, I was given pTokyo as a possible resource for me in Japan, from the non-profit where I was tested. A couple of years ago there was an intern who worked with pTokyo and they seemed to think they might still be there. While I didn’t end up contacting them, this is organization could be a resource for those who need to communicate in English.