PrEPed in Japan

I have had no side effects at all, except feelings of reassurance and security!

I am just angry and frustrated that I didn't know about PrEP earlier and that it is not being promoted in countries like Japan or my home country (which promotes condoms only). I am angry because I believe I could have convinced my boyfriend to go on it and could have protected him from infection via PrEP.

by Anonymous in Tokyo

I recently self-initiated PrEP in Japan (using Truvada generic Tenvir-EM by Cipla), and I wanted to share my experience for anyone outside the U.S. who may face similar issues.

My Japanese boyfriend contracted HIV earlier this year. We found out after I contracted an STD from him and he tested positive for HIV (while I remained negative). We have been told by health workers that HIV infection rates are increasing significantly in Tokyo (anecdotally among young Japanese who like foreigners/tourists).

I found out about PrEP in the U.S. online but we were told by my boyfriend's doctor that Truvada is not covered for PrEP by Japan's health insurance system. I couldn't afford to pay for Truvada in full, so I decided to buy the Truvada generic Tenvir-EM for about $100 per month via a Japanese online pharmacy (manufactured by Cipla in India).

After several blood tests and my annual health check including kidneys (I will increase the kidney function check to four times a year going forward), I now self test for HIV monthly using the OraQuick oral-swab antibody 20-minute tests, which I buy from Amazon (about four at a time at a cost of $50 each). So the tests and pills cost me $150 per month in total (including shipping) but I think it is worth it.

I have had no side effects at all, except feelings of reassurance and security!

I am just angry and frustrated that I didn't know about PrEP earlier and that it is not being promoted in countries like Japan or my home country (which promotes condoms only). I am angry because I believe I could have convinced my boyfriend to go on it and could have protected him from infection via PrEP.

He is not on any HIV medication yet so we still use condoms when he tops me, but now that I am on PrEP I am more relaxed about things when I top him. The fear has gone and our relationship is stronger than ever, thanks to one small pill a day.

I believe every government and HIV organizations have a moral responsibility to make it as easy and cheap as possible for every gay man on the planet to be on PrEP and stop all new infections in the community. If it works 100 percent of the time for us who take it daily, it should be promoted as the first line of defense against HIV (together with condoms against other STDs).

I aim to let as many people know about PrEP as possible.

Paying for PrEP - Helpful Info for People/Providers

by Enid Vazquez, via Positively Aware's recent (an excellent resource) "Let's Talk about PrEP" issue.  

And be sure to check out this new fact sheet on payment strategies for both PrEP and PEP published August 21 by NASTAD:  "Pharmaceutical Patient Assistance Programs and Co-Payment Assistance Programs for PrEP and PEP."

Asked if he’s had any problems getting insurance companies to pay for HIV PrEP, HIV specialist Tony Mills, MD, of Los Angeles, replied, “None so far.”

In Chicago, Michelle M. Agnoli, RN, with the Midwest AIDS Training and Education Center (MATEC), said, “There’ve been no problems that I’m aware of. None.”

And Shannon Weber, MSW, of the Bay Area Perinatal HIV Center (BAPAC) out of San Francisco General Hospital, said, “I’ve only heard one report of it not being approved. Generally I’m hearing positive responses about access.”

But concern about how to pay for PrEP is the number one question Weber gets when she makes presentations about the new HIV prevention therapy. Doctors will tell her “it’s hard to get [insurance] coverage,” yet when she asks them if they have prescribed PrEP, none of them have.

Learn more about paying for PrEP here.

 

 

VIDEO:4 Months on PrEP - BareBack Sex, Less Stress, Moving Forward

Day 121: My PrEP Journey

The incredible, passionate, smart and oh so charming prevention advocate Ken Almanza from LA (who we featured on the blog in April ) is back with a new video update talking about his life, sex, relationships, and  being on PrEP.

Four minutes or so - and well worth your time.

Post by Ken Almanza.

From Personal to Professional: Alan Johnson writes about his PrEP experience

 by Alan Johnson, MPH, excerpt from Positively Aware's recent "Let's Talk about PrEP" issue  

"I attribute my high adherence rate to knowing that PrEP will only work if you take it. I always carry a few doses with me and my iPhone alarm always reminds me to take my medication."

I first heard about PrEP at a community meeting a couple of years ago, after it was shown to be an effective prevention method in human studies. I decided to look into PrEP further when the FDA approved the prescription drug Truvada as prevention for those who are at high risk for acquiring HIV. In yet another community meeting soon after FDA approval, I learned that some insurance companies were planning to cover most of the cost for treatment. I also learned that patient assistance programs from the maker of the drug, Gilead Sciences, have been extended to those taking Truvada as PrEP. 

Though I have a background in public health (primarily sexual health research and direct prevention and care services), I found that the more I heard about PrEP, the more questions I had.

If I was interested in actually taking PrEP, how would I afford it?

Was I even truly at “high risk” for acquiring HIV?

Would I have adverse reactions to the meds?

How would I overcome my internalized fear and the stigma associated with actually reaching the pharmacy counter and receiving the prescription?

What if someone I know sees the Truvada label laying around my apartment and Googles it?

Would they think that I was HIV-positive?

Read the rest here. 

Do you spit, or?

PrEP involves swallowing a prescription drug every day to prevent HIV.

You are in the right place to learn more about this safer sex option. Check out our posts, read a fact sheet, and click the links to the right.

If you have questions about PrEP, please email us at myprepexperience@gmail.com. We are happy to help. We are also available to help you troubleshoot any problems you may encounter with your medical provider or with your health insurance.
 

MUST READ: Let's Talk About PrEP - Special Issue on PrEP from Positively Aware

Check out this special summer issue from Positively Aware on PrEP. Contents include personal stories from real people using PrEP, updates from the world's leading scientists, and tips on how to pay for PrEP. Good stuff, must read!

Click here to access the full issue.

Episcopal Priest and CEO of Chicago House Shares His PrEP Experience

I’m not hip enough to tweet, and this is my first experience blogging, but I’m Stan J Sloan, an Episcopal Priest and the CEO of Chicago House, and this is my PrEP experience.

Chicago House was the first provider of AIDS Housing in the Midwest, and I am in my 14th year as CEO. I have heard about PrEP and PEP since they first surfaced, but somehow I didn’t begin my PrEP regimen until about nine months ago.

After the breakup of a five year relationship about two years ago, I have been single and dating. A process that is as charming as you can imagine it being for a 51 year old gay man.

Dating in 2014 is certainly different than it was when I came out as a 21 year old, and so I’m probably pretty normal in being as likely to meet someone decent at a coffee shop (although I don’t drink coffee) or at a black tie…as on an online site.

I figure that finding the right guy is a numbers game, and so I play the numbers until I find him.

I am a gay man who loves monogamy and wants that again in my life, but until then I date with all of the implications of dating. And so in that process it took me over a year post “FDA Approval” of PrEP to think through that, “condoms are great and always work…until that experience where they don’t.”

And when that occurred to me…and when I stopped to think of how lucky I was that I was still negative…and when I stopped to think how I wanted to move that “luck” to “certainty”…I called my doctor and asked about PrEP. And a week later I was on it, fully covered by my insurance.

I have had no side effects at all. And I am more relaxed about sex. And I no longer white knuckle getting my regular HIV tests done.

And I am helping my friends learn about PrEP, and I am working with the staff at Chicago House to see how we can help others learn about PrEP to keep them healthy.

So that is my PrEP experience at a personal level. HOWEVER, at a professional level I would add that the same judgments we received from the Religious Right when we started doing condom campaigns in the 80’s (“you can’t push condoms because you are condoning casual sex, and we should strive for monogamy”) has now resurfaced from WITHIN our community about PrEP (“you can’t encourage PrEP because you will be encouraging barebacking!”). It is maddening. It isn’t our job to dictate what other’s do in their bedrooms.

It is our job to keep people safe and healthy, and PrEP does just that. So what is the problem here?

In the 1980’s Larry Kramer and ACTUP armed us with, “Where’s Your Rage?” to get government, and pharmaceutical companies, and the general public to pay attention to AIDS. It is now 2014, and I would propose that arming ourselves with “When Is It Labeled A Scandal?” that gay men and Trans women have never heard of PrEP and are still seroconverting, and that it is still unaffordable to too many, and there is still only one option available from a pharmaceutical company?

When is it a scandal? I would say that now. It is a scandal now.

And that is the full sum of my first blog, and of My PrEP Experience :)

Now you have a good day!

Anon in Tampa - "She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP."

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t.

by Anon in Tampa, Florida

I am new to taking Truvada as PrEP, but it’s definitely been on my radar for awhile - it just so happened that a few life changes prompted me to explore PrEP and have a chat with my doctor.

I recently came out of a breakup of an 8 year relationship - we were non-monogamous and fluid-bonded with each other, but used condoms for any other sexual encounter outside the relationship. We were both HIV- and I will admit that we played the game of serosorting (and in my case, being a top, de facto “seropositioning”) when we chose sexual partners to be with.

Flash forward a few months. I was moving forward, but not exactly playing the field sexually, as the breakup had me down in the dumps for quite awhile. However, I did have one close friend who I started to become physically intimate with, and while we didn’t put a label to the relationship, sex with each other was more frequent than a “fling”.

A few weeks ago, he came out to me that he had an HIV test come back positive and that he was worried that he inadvertently put me at risk. I reminded him that we had been using condoms and that I wasn’t aware of any other health factors between the two of us that would put us at higher risk than having sex with someone of unknown HIV status.

I was surprised that my feelings on the matter weren’t as tainted by the “HIV panic” that informed so much of my relationship decision making in the past - but this was a real, live person in front of me who I cared about. It made my previous thinking on the matter seem pretty trivial and backwards.

I started asking myself some hard questions and looking at my sex life in a more pragmatic way:

I am a gay man, with HIV+ partners or partners of unknown status, who will most likely be non-monogamous for the entirety of his sex life.

So why wasn’t I using PrEP?

I honestly thought that the hardest part would be convincing my doctor to consider putting me on Truvada, but I’m happy to say that it wasn’t. I know that the practice I go to treats quite a few of my LGBT friends, but it isn’t the kind of office that advertises in the local gay monthly, and, to be frank, they’ve always seemed a little haphazard in their approach to HIV testing (always at the patient’s request only, and with a double-paged consent form full of arcane legal wording that says that the test is not confidential), so I wasn’t expecting much.

However, my doctor informed me that she and another physician at the same practice had just been discussing PrEP the day before and were committing to get educated so that they could be ready for the first person to request consideration of a prescription. It just so happened that I brought it up the very next day.

I used the factsheets from the My PrEP Experience site and Gilead (check out links to the right for these and more) to better inform my doctor of why I was bringing it up and what my lifestyle factors were. She was very impressed with the homework I had done, and saw no reason why I shouldn’t be on PrEP from a general point of view.

With my recent HIV test and blood work, my doctor was able to write my prescription immediately and also ordered a more full STI picture as a baseline (to rule out any chance that I had Hepatitis B). My insurance covered all but a reasonable co-pay, and I was able to start taking it pretty much immediately.

I wanted to tell this story because this happened in Tampa, FL, at a practice that is not specifically focused on LGBT concerns. Sure, Tampa may be one of the larger Florida cities, but it’s not specifically known for having a liberal take on social issues, so I was a little worried that the doctors may be closed-minded when it comes to PrEP.

I was very happy that this was not the case.

NEW BOOK: Positively Negative: Love, Pregnancy and Science's Surprising Victory Over HIV

"How could someone have sex without a condom, not pass on the virus and have a healthy baby? It went against everything we’ve heard about unprotected sex for decades." - Heather Boerner, author

My PrEP Experience is very excited about this book. We featured one of the remarkable individuals whose story is told in this book on our blog. Our first post about "Poppy" was published in June 2012 - Trying to Get Pregnant and Thankful for PrEP and then, we were delighted to post a very very happy follow-up in November 2013 - Poppy's Story - How A Magnetic Straight Couple Utilized PrEP for Conception.

From a press release:

Positively Negative: Love, Pregnancy, and Science’s Surprising Victory Over HIV
($2.99, Amazon, July 2014) takes readers behind the scenes of the crucial last 15 years of the crisis, when scientific detectives forged a new understanding of the virus and the potent antiretroviral medications that would tame it.

Then, it follows two HIV-affected couples (in which one person has HIV and the other does not) as they pioneer a path to parenthood, harnessing the power of the new science in the service of the most natural of all drives—the formation of a family (including Poppy!)

In 65 brief pages, veteran journalist Heather Boerner weaves a narrative that’s part love story and part medical mystery, all in language that it’s easy for readers to understand.

In it, readers will learn:

• How HIV can affect heterosexual couples and their desire for parenthood;

• How HIV medicines have changed the futures of HIV-positive people and those they love;

• How babies can be born without HIV even though a parent has the virus;

• What it means when the news talks about pre-exposure prophylaxis (PrEP), Truvada, and treatment as prevention;

• How condoms went from the de facto safe-sex method to one of several options;

• How to safely conceive a baby with one’s HIV-positive partner;

• How far we have to go to implement the science and get to zero new HIV cases.

Order the book here.