Your Experience is a Gift

For questions about PrEP in general, and for a Chicago/Illinois specific provider listing, visit www.PrEP4love.com.




Monday, December 1, 2014

NEW RESOURCE - Learn About PrEP Coverage on the Illinois Health Insurance Marketplace

Check out this fantastic new resource - "PrEP Coverage on the Illinois Health Insurance Marketplace" published by AIDS Foundation of Chicago - home to My PrEP Experience.

The document summarizes the monthly out of pocket cost a person can expect to pay for Truvada under each of the plans on the Illinois health insurance marketplace.

To learn more about the marketplace and health coverage, get started at www.GetCoveredIllinois.com.

Chicago doctor: "I don't always use condoms. And I don't always top. I will not give this up."

I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.


via Chicago doctor

I am a 51 year old HIV negative gay infectious disease physician. 

When I began having sex at 19, I bottomed bare from the start with a few guys.  Then at 21 (in 1984), in one of my med school classes, the lecturer said that the development of an HIV test had allowed researchers to discover that for every one AIDS case in New York there were 100 infected.  I suddenly realized that there were more than 3 cases in Michigan, and that the bathroom stall at Mason Hall was not a good idea any more. 

So I tried to marry a guy, as I was kind of like that anyways.  That went 3 years.  Then I got dumped.  I tried Catholic celibacy for a year, then started going to bathhouses twice weekly to watch other guys fuck, but I was too frightened to do anything but oral. 

At work, I watched crop after crop of patients my age die.  Shocking horrible deaths.  Old college crushes one by one were memorialized, and then slowly forgotten   I went to therapists to try to control my behavior.  It worked well enough. 

I tried to marry a guy again at 30.  At 34, I found him crying in the bedroom, having just got his HIV diagnosis that day.  So, I learned we were not actually monogamous, and my escape-the-epidemic strategy had failed.  But it hadn't.  He had made me a top, and I was OK--negative despite the worst sore throat ever that week.  I helped get  him to an  undetectable viral load, took him to my best friend colleague, who put him on crixivan, zidovudine and lamivudine.  He is healthy, and with me, now for 21 years. 

Since I was 35, I have not used a condom when I fuck him, and he has never had a detectable viral load.   I let him come in my mouth, because I want that.  But we stopped having sex when I was 48.  I don't know why.  We love each other.  He is my mate in life.  He bakes me raisin bread, washes my clothes, lies beside me sleeping when I come back at midnight from hospital rounds. 

When I was 48, I saw the "monkey PrEP" data.  I began taking Truvada then, on my own. I took a half pill every day.  I did not tell my internist.  She refers patients to me, and is like a second mother.  I got labs for my cholesterol.  I took  leftover meds that had been returned, as there was always enough, because I take care of hundreds of HIV patients.

I discovered the internet at 49, and Grindr at 50.  I have more sex now than when I was 19.  I have  a few young guys who need me, who engage me, and it feels so wonderful to be alive now.  I don't always use condoms.  And I don't always top.  I will not give this up. 

Each of these relationships (ok some of them are, at best, encounters) makes me feel something-- vital.  I can't suppress these needs through work any more.  I am now officially on PrEP.  I am still negative.  I so hope the miracle of 2012 (when the FDA approved Truvada as PrEP) will save me, just like the miracle of 1996 saved the last few of my college friends. 

 

Monday, November 24, 2014

Pozilady - "Since knowing about PrEP, I have been able to help my son's father remain healthy"

by Pozilady
Washington, DC

I am in my mid 30's and have been diagnosed since I was 18. I've been undetectable for many years now. I've had quite a few relationships since my diagnosis. Some rejections as well due to my status, but my disclosure allowed me and those individuals to remain very close friends with an insurmountable amount of respect for one another.

Nevertheless,  the delight of my story is I have birthed a son who is over a year old now and HIV negative.  His father remains negative as well due to Truvada! (And prayer!!!)

Originally,  we used Truvada for him as post-exposure prophylaxis (PEP) due to a failed condom,  but as our relationship grew stronger we mutually decided to PLAN to have our miracle child. See, my "Inf. Disease" doctor would always encourage me to have a child, stating "you are healthy,  what are you waiting for?" So, my partner and I talked it over with my OB/Gyn doctor and asked his advise on what to do in case of a mishap and/or when trying to conceive.  They both led us to Truvada.

Since knowing about PrEP, I have been able to help my son's father remain healthy,  it's is absolutely wonderful for many reasons.  It decreases the burden of possible guilt should one become negative on a count of me. Also, if we decided not to stay together as a couple we both could move on with our lives, and not feel forced to stay together because of a status.

Disclosure is hard, but it is a MUST. Having knowledge of your status, regular doctors visits and labs, keeping up with your numbers, staying on your meds and finally educating your partner is empowering!

 

Sunday, November 23, 2014

VIDEO: "Love somebody" - Dakota is back with a vid on his first PrEP day

[Read Dakota's blog from yesterday - Alabama firefighter, paramedic and "pitcher" goes on PrEP.]

In the video, Dakota talks about all kinds of stuff regarding this first day on PrEP. Including having a rather "invasive" checkup before hand - with swabs going in all kinds of orifices. He complains about awful PowerPoints used for patient education. (can we get an AMEN?)  And he talks about how he has always made decisions that were appropriate to him and his life - not paying heed to the judgments of others.

Thanks for sharing Dakota! We look forward to following your journey ;)

video

Saturday, November 22, 2014

Alabama firefighter, paramedic and "pitcher" goes on PrEP

by Dakota
Birmingham, Alabama
(with a shout out to the UAB 1917 clinic

I have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.


About 2 years ago I started hearing about PrEP. I only gave it passing interest. As a health care provider (I'm a firefighter and paramedic), I was educated on PeP and even had to go through a course following a needle stick.

But for some reason didn't look into PrEP very much.

Recently I began thinking about it and finally made an educational appointment to learn more. After about an hour and half with a health educator I found out that my insurance does cover it and it's really not even very expensive. I have my first clinic appointment in a few days to be tested for HIV and will go to a group education session and then see a provider to get my prescription.

I'm really looking forward to the security this will provide. Candidly I will admit that I do not use condoms. As a "pitcher" I've always considered it a safer practice but have often felt that I am missing the opportunity to have a full sex life and "catch" when the time is right.

My decisions about condoms are personal and appropriate to myself, I make no apologies for my decisions and I respect opposing decisions. PrEP makes it possible to still have a layer of protection without the layer of latex.

I'm also looking forward to being able to help spread education about PrEP. I hope that everyone can find a strategy that works best for them.

 

Tuesday, November 18, 2014

¿Que es PrEP? - Learn About PrEP in this Spanish PowerPoint













Ques es PrEP - Profilaxis Pre-exposición
- is a short PowerPoint in Spanish describing PrEP for the prevention of HIV.

The smart and fabulous prevention advocate Alex Barros of Miami (pictured) created this excellent presentation. Please take advantage of this great resource.

Alex can be reached at galexbarros at gmail dot com.

 

Thursday, November 6, 2014

Physician with Poz Partner Chooses PrEP

via Greg
Chicago, IL

And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.

I started taking Truvada for PrEP four weeks ago. 

My reason for wanting to take PrEP is pretty simple; my partner of five months is HIV-positive.  It's uncharted territory for me; I've never been in a relationship with an HIV-positive man in the past.  Out of respect for his privacy, I'm keeping this post anonymous. 

Although I work in the health care field as a physician, I'm not an infectious diseases specialist, and surprisingly, I was totally unaware of PrEP until I started looking at HIV websites earlier this year, in an effort to better understand the side effects of the medication that my partner is taking (Atripla).

After I mentioned PrEP to him, he admitted that he knew about of it, but that he didn't mention it to me because he had heard about all of the risks of untoward side effects.  He was actually "amazed" that I would consider taking it, in view of some of the bad press it has received.  I told him that I'd done a lot of reading about the pros and cons, and that I was comfortable with starting it. 

I had also inquired about Truvada for PrEP with a friend/colleague in infectious diseases who does treat HIV patients, and it was endorsed without hesitation.  I was told that I didn't need an infectious diseases consult to obtain a prescription, and that any physician could prescribe Truvada for PrEP.

So, I went to my primary care physician (PCP) and told him what I wanted and why; I had downloaded the PrEP checklist and agreement form, and brought them to my appointment.  I wasn't shocked, but I was a little disappointed that my PCP refused to write me a prescription for Truvada; he was not aware of PrEP (then again, neither was I), although he agreed that it was the right thing to do.  He repeated my HIV test (which was negative) and requested that I see an infectious diseases specialist in his network, which delayed the process a couple of weeks while I waited for an appointment.  Before I left the office, I handed my PCP a copy of the CDC Guidelines for Truvada as PrEP, which he appreciated.

I eventually saw the ID doc and was screened for hepatitis A/B/C (all negative), then prescribed Truvada for PrEP.  I had been vaccinated against Hep B as part of employment, but never had the Hep A vaccine, so that was also recommended. 

The only potential stumbling block left was insurance coverage.  I wanted to take PrEP, but I couldn't pay ten thousand dollars a year for it, if my insurance carrier would not cover it.  The drug was covered by my insurance (with a $30 copay each month), and I brought my bottle of blue pills home to start treatment. 

My ID doc recommended taking it at bedtime, but after a few nights of insomnia (totally uncharacteristic for me), I switched to taking it in the morning, which restored my normal sleep cycle.   Aside from the sleep disturbance, I've not noted any other adverse effects so far, and I'll get my bloodwork checked again at the 3-month point. 

I don't think there's anything unusual about my PrEP experience thus far, but I just wanted to share my story with the hope that more people will consider taking advantage of this extra layer of protection.   And speaking of protection, even though I'm now on PrEP and my partner has an undetectable viral load, we still use condoms as recommended.

 

Monday, October 27, 2014

Helping people get PrEPared at USCA 2014


Health! Hope. Yes Gawd! Finally!

via
Alan McCord, Project Inform
Matthew Rose, PxROAR
Pedro Serrano, Project PrEPare
Jessica Terlikowski, AIDS Foundation of Chicago
Lisa Diane White, SisterLove

These are just a few of the overwhelmingly positive responses we received from folks when we asked them about PrEP at a booth hosted by Project Inform, AIDS Foundation of Chicago, SisterLove, AVAC PxROAR, and Project PrEPare at this year’s United States Conference on AIDS (USCA). More than 1,000 service providers from all 50 states participated this year and we talked to a lot of them!

Over the course of the conference we asked individuals to share their thoughts about PrEP. We asked what is the first thing that comes into your mind when you hear PrEP? What excites you about PrEP? What concerns you about PrEP?

Each of us at the table talks about PrEP on a regular basis. We were ready to dispel myths, explain the science behind the clinical trials, and help people gain a deeper understanding of this powerful new prevention option.

We were blown away by the level of knowledge that folks came to the table with. They knew about PrEP. They understood how it worked. Some came from agencies that have already integrated PrEP education into their standard prevention risk reduction messaging. Others represented agencies that were exploring the possibility of setting up a PrEP clinic. Many raised practical questions about how, would, and could it work in their communities.

We learned that many clinics in smaller cities or in more suburban or rural areas have begun the

These developments contrast quite dramatically from what 2013 USCA participants said about PrEP. Most stated last year that very few providers in their localities were even discussing PrEP as a viable option. Instead what we heard this year is a clamoring for resources, tools, and support for program staff to ensure they have the necessary skills and knowledge to serve their communities. Many remarked that they simply don’t have the resources to train their staff. And we rarely heard anyone comparing, contrasting, or challenging condom use over PrEP use, or vice versa.

We anticipated more resistance than we encountered. Instead, folks raised practical, earnest, and important questions. How will my community make decisions about allocating resources to PrEP when the prevention pie is already so lean? What steps are being taken to ensure transgender people are a part of decisions being made about PrEP programs?

What can we do about access in the South where Medicaid had not been expanded? How can we ensure people who are undocumented can access PrEP when they are ineligible for health care through the Affordable Care Act? In response to these questions, we shared that Gilead has a patient assistance program that is open to people who are not documented citizens, but can provide evidence of their US residence with utility bills or a library card.

Others shared what the new tool meant for them personally:

• 12:00pm every day.

• More protection for my guy.

• PLHIV in sero-different partnerships further empowered to have families they want.

• Magnetic couples (heart)

All of this isn’t to say that every USCAer was fully supportive of PrEP in this early adopter phase of rollout. We did hear from a few people who are uncomfortable with being on the front end of a new intervention, fearing missteps along the way. Some urged that we slow the PrEP train down until more data are known about adherence and side effects in the real world. Others expressed concerns that people will not take it correctly; they will stop condom use or not use them as much; and that we will see a rise in STIs. Yet for the most part these individuals were willing to engage, listen and ask for more information. We also heard from few people who decided that PrEP was not for them due to concerns about their own individual adherence or reluctance to take pills.

In short, the dialogue was honest and open and respectful. Such characteristics are critical to successful implementation of this new intervention. The PrEP tide is turning. People aren’t just lukewarm about PrEP anymore. They are saying with greater frequency, “of course I know” or “of course I’ve heard”. The tide is turning. People are moving past “what are you talking about?” to another level of “let’s figure out how to make this work.” There are robust discussions happening all over the country as people begin to develop and figure out their communities’ response to PrEP. discussions around implementing PrEP services. We heard this from providers in Salt Lake City, Des Moines, Kansas City, Albany, Rochester, San Antonio, and eastern Alabama, and from the states of Michigan, Alaska and Hawaii.






Wednesday, October 15, 2014

That Was Easy! Tuan Shares His No Drama PrEP Experience

via Tuan Nguyen
Harrisburg, Pennsylvania


I just wanted to send a quick write-up of going after and obtaining a prescription for PrEP.

My experience was actually simpler and easier than the ones of some other people whom I've read about on your blog. I made the decision in August 2014, and when I make up my mind, then I just do it. I printed out the recommendations under the Risk Evaluation and Mitigation Strategy (REMS) for Truvada for PrEP, and took it to my primary care person, Allison.

I'm a scientist, and specifically chemist, by education and former careers, so I know enough to be dangerous (^_^).

Allison had not had prior experience with anyone requesting Truvada for PrEP, which didn't surprise me because I live in the middle of suburban straight-white-people-land. She's a fantastic certified nurse practitioner (CNP); knows my educational and career backgrounds, and medical history; and we have a great rapport. I carefully explained my reasons to her about why I wanted to start PrEP, and I'm pretty sure that the "I know enough to be dangerous" part helped quite a bit there. I was also confident, which goes back to when I make a decision, then I go for it. She was very supportive, and was more than willing to go ahead. I also let her know about the Gilead REMS site for medical care professionals.

I had my bloodwork done, which came back HIV-negative and with the proper creatinine levels. Allison phoned the order into my preferred pharmacy, but there was some sort of miscommunication because someone at the pharmacy forgot to order the Truvada, which was annoying but mistakes happen so I understood. Then the mail order pharmacy only shipped thirty days of a ninety day supply, and pharmacies can only give out exactly what's written on the prescription, so I had to wait a few more days haha. When I picked up the prescription, the retail cost for ninety days was $4991.99, and the Aetna member cost was $3881.80; however, with my Aetna prescription insurance, it cost ninety dollars. I'm mentioning this to give you some insurance data and pricing data for your website.

I'll also mention that I have scheduled in HIV testing every three months, and I also want additional routine bloodwork done to make sure that my kidneys are all right.

It's interesting how I had a relatively easy time of getting onto PrEP, similar to "Anon in Tampa", especially considering that I don't live anywhere close to a "large" city and/or influential medical university, and/or LGB area.

P.S. I forgot to enroll in the Gilead Co-Pay Coupon Card program, so I probably would have had my ninety dollar copay covered by Gilead. Ah well. I signed up, and I'll use it on my first refill (^_^).

Thursday, October 9, 2014

Todd in Palm Springs - "I am disappointed that people are not yelling from the rooftops about this medication!"

by Todd
Palm Springs

I met the most wonderful man in January and he was hesitant to have sex. After about 3 weeks he told me he was positive. It didn’t affect my feelings for him and he was so used to rejection. Over the past 9 months I have fallen in love with this man.

 I have a great doctor that is gay (I live in Palm Springs) and started hearing about Truvada. I started taking it about 7 months ago, no real side effects except for lip numbness which may have been a food allergy.

I am disappointed that people are not yelling from the rooftops about this medication!

He has been positive for 8 years and is “undetectable." Between PrEP and his undetectable status I feel we are safe. 10 years ago, someone with HIV would’ve been off the table for me to be honest. Judge as you will but I am sure many of you agree.

I work in healthcare and have my doctorate but remain scared like any other gay man. I came out in 1983, same years as AIDS. It has been present in my entire adult life. I have been in three 7-year relationships with negative partners and now venture off in singledom. I am in my mid 40’s and  live in a town where 40% of the gay men are positive. My reality.

I tell anyone that will listen about Truvada but I want to always be respectful of my boyfriend's status. It really is nobody's business but at the same time I want to share our “Truvada” secret for their benefit.

Is anyone else in my shoes? Stuck between a rock and PrEP?

 

Tuesday, September 30, 2014

[AUDIO] Magnetic Love and Making Healthy Babies - Carolina's story



This interview was conducted in Spanish. The Spanish transcription follows the English translation below. Click here for the audio link (in Spanish) and have a listen.

Folks interested in more English/Spanish PrEP and PrEPception information are invited to visit the PRO Men page of the BAPAC website.


Dr. Pollock: Hi, my name is Dr. Lealah Pollock.  I am a family medicine physician in the Family Health Center at San Francisco General Hospital.  Today, September 10th, 2014 we are at BAPAC’s offices at the San Francisco General Hospital with Carolina and her baby to talk about her experience using PrEP as part of her comprehensive care. At the San Francisco General Hospital we offer PrEP as part of primary care, comprehensive sexual health care.  So, hello Carolina.  How are you?

Carolina:  Very well Dr. Pollock.

Dr. Pollock: So, to commence. How did you get in touch with the Family Health Center and with BAPAC?

Carolina: I was receiving care at the Castro Mission clinic and asked my physician that I wanted to have a baby.  They gave me information about BAPAC and the San Francisco General Hospital. That is how I came here to the hospital to request information.  Well, they call me to give me information about PrEP and referred me to the Blue Team (primary care clinic) at the San Francisco General Hospital and I met the staff that helped me, especially you Dr. Pollock, they gave me guidance and more information on how to get pregnant from an HIV positive person.

Dr. Pollock: Very well.  And when you told your doctor. Was it the first time that you and your husband asked about getting pregnant?

Carolina:  No.  I had already asked my doctor at the clinic I used to go to, but they always told me that getting pregnant was impossible. It was here where I found the right answer.  You helped me to have that answer.

Dr. Pollock: Had you looked for information before that?

Carolina:  Yes.  I looked for a lot of information and it was always impossible.  They told me that the only way to get pregnant was insemination and that they had to “clean” my husband’s semen.  But we did not want that.  We wanted to get pregnant in a natural way.  It was impossible.  Thanks God that I was given the information here and here you have the results. 

Dr. Pollock: Good! How did you decide to take PrEP? I remember the first time I met you; your husband’s viral load was still detectable.  He did not have an undetectable viral load, and we took some time to talk about PrEP as a possibility.  So. Why did you in the end decide to take PrEP

Carolina:  I decided to take PrEP because the physicians in this hospital helped my husband’s viral load to become undetectable, so I felt more comfortable.  Unfortunately, there are not many women that have the possibility to have all of the information about PrEP, but I feel that in this hospital you have the best physicians that provide the necessary information and that is why I made the decision and thanks God all worked out well. 

Dr. Pollock: And thank you, but you were the one that had the strength of asking for information and make the decision of taking PrEP, and having a baby.  And the baby is so beautiful…

Carolina: …healthy…

Dr. Pollock: Did you have any adverse events taking Truvada or PrEP?

Carolina:  No, I did not have any adverse event.  I think that women should use it as a method.  We never know, many people do not want to ask, and yes, you can get pregnant and it is safe.  I did not have anything and I am very happy and prepared to have another baby.

Dr. Pollock: Good, in the future.  How was the experience with your husband and in your world that knew you were taking PrEP?

Carolina:  Well, personally, my life is my life and I make my own decisions and nobody in my family except my husband’s mother, father and few brothers know that he has this disease.  It is unnecessary that all of your family know about it if you do not want to.  You can make your own decisions, who you share it with.  And here, you know that this information is confidential.

Dr. Pollock: True.  Did your husband support you to take PrEP?

Carolina:  Yes, he supported me since both of us wanted to have a baby.  We dreamed with having a baby…and there she is!

Dr. Pollock: Do you have any piece of advice for other women that are planning on taking PrEP or having a baby with an HIV positive partner?

Carolina:  Yes, as far as they have health providers that are knowledgeable about it and that can provide them with the necessary information.  My advice is that if you can make your own decisions and find a specialist like the ones I have here at the San Francisco General Hospital.

Dr. Pollock: Very well. Thank you to talk to us today and share your experience.

Carolina:  Thank you for giving me this information and thanks to the General Hospital because we got what we wanted and without your support it might have not been possible to have this baby that we have today, six months old with adequate weight and healthy.

Click to the next page to read this interview in Spanish. Click here to listen to it.

Sunday, September 14, 2014

VIDEO: SF Gay-mer Jeremy on why he's on PrEP

I don't think being on PrEP means I'm going to go out and fuck every single person in the world.... Maybe I will, maybe I won't. I don't know.

via Jeremy, San Francisco
[who sent us this lovely post and video a few weeks ago - thanks for sharing Jeremy!]

I posted this to a Facebook page dedicated to PrEP facts and experiences and thought I would share with your blog.

After journeying through ill-spoken insurance verbiage to get on PrEP (and after doing extensive research) I was finally able to cut through all of the wrong information to find out that PrEP would be covered and would not be as expensive as I was originally told.

 I live in San Francisco but am originally from a small town in the Central Valley and when trying to discuss PrEP with folks there (in particular a cousin in a mixed status relationship) I have found it to be daunting and almost fruitless. I came to the realization that the folks I was discussing it with were, in essence, afraid of information and facts; throw too many numbers their way and they begin to get intimidated.

Admittedly, conversations about HIV and sexual wellness here in the city are far easier to have. So I thought I would document my PrEP journey as an every-man (which I am) during milestones.

Today I hit my 7th day on PrEP which for most is the day where Truvada is working at maximum efficacy.

So here's my video! -=O)

Sunday, September 7, 2014

Bill's "Pretty Epic" PrEP Experience

So, I heard about this PrEP thing on a few websites, did some research, and thought 'Damn, gurl, this is right for me.'

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape.But I can assure you I would not done all of this when I was in my late teens or early twenties.


by Bill
Portland, Oregon


Hello. I've been on PrEP now for 2 months and thought I would share with folks what I had to go through to get my prescription from Kaiser here in Portlandia (Oregon). It was pretty epic.

So, I heard about this PrEP thing on a few websites, did some research, and thought “Damn, gurl, this is right for me.” I went to my primary care doctor which, as fellow Kaiser members know, is S.O.P. for getting anything at Kaiser including a band aid. I don’t know my primary care doc too well (because I am generally healthy and don’t go to the doctor very often), but he seems like a pretty cool guy.

He listened and basically agreed that the medicine was right for me. But when he went to the Kaiser Computer System (aka “Hal”), he was not allowed to prescribe it to me, despite his best efforts. He said Kaiser protocols required that he refer me to an Infectious Disease doctor even though I had no infectious disease. (As an aside, I am somewhat baffled that my primary doc cannot prescribe Truvada, but he is allowed to prescribe powerful opiates and other really fun controlled substances).

Anyway, my primary doc referred me to the Kaiser IDI clinic and that’s when the real fun began. After setting my appointment with an IDI doc (which was 2 weeks out), I received a call from the IDI doc’s assistant telling me I needed to fill out a questionnaire before meeting with the IDI doc. Fine, I said, e-mail it to me.

The questionnaire required me to reveal lots of details about my fairly active sex life. How many times have I had sex in the last year? In the last 2 months? Do I sleep with dudes, ladies, or both? How often do I use condoms when I have sex? Do I do drugs? What do I think of the crisis in the Ukraine? I dutifully completed the questionnaire and sent it off to the IDI people for their consideration and entertainment.

Having jumped through the questionnaire hoop, the next step in My PrEP saga was to meet with the IDI doc. I guess the questionnaire wasn’t enough, so she asked me some more questions. Am I in a relationship? Do I want to be? Do I just meet guys for sex? Where do I meet guys (online, bars, etc.)? Have I ever had any STD? If so, what was it? When was I last tested for HIV? Am I a top or bottom?

If you want to know the answer to the last question send me a private message or find me on Scruff.

The IDI doc told me that I would have to be tested for HIV, gonorrhea, syphilis, hepatitis, and boy cooties. That all made sense. She also said they would test me for something called the CCR5 deletion gene which is that gene mutation that a small percentage of people have that makes them essentially immune from HIV, even if they are really, really, really slutty. I suspect their reasoning is that there would be no reason for me to be on Truvada (which, as the IDI doc pointed out to me several times, is very expensive) if I have some sort of natural HIV immunity. (Turns out I have one copy of the CCR5 gene which means I have “heightened protection against HIV,” but not immunity. That requires two copies of the gene).

Now, after all this, I honestly thought I was going to leave my appointment with the IDI doc with a prescription for PrEP (pending the results of my blood work). Boy, was I wrong.

IDI doc told me that Kaiser policy is to take requests for PrEP to a Committee of IDI docs for a vote. This Committee (which, I have confirmed, is not the same as the Obamacare Death Panels) meets once each month. Their next meeting was two weeks away. My IDI doc said she would advocate that I be on PrEP. I love her.

Interestingly, she also told me that I was only the third person in the entire Kaiser System in Oregon (which is actually pretty large) who had requested PrEP. She also said the other two had been turned down, including a fellow who was in a serodiscordant relationship with an HIV+ partner. After I looked up “serodiscordant” on my iPhone dictionary, I was quite shocked at this. I mean, of all the people who want PrEP, shouldn’t the HIV neg guy who is regularly having sex with a POZ guy be close to the top of the list? But I guess it’s none of my business.

My blood test results came back. HIV neg and no STDs. Yippee! Also, I was informed that the Committee approved my request for PrEP. So the stage was set and I picked up my one-month supply at the Kaiser IDI pharmacy, not that regular Kaiser pharmacy (that would be too easy). When it came time to refill my prescription, I had to have a another appointment with the IDI doc (by phone). Among other things, she asked if I had had any “risky” encounters which I understood to mean condom-less sex. Part of me wanted to say no, because I am on PrEP which makes them not “risky.” But I refrained and gave her the lascivious details she wanted. I then went through another round of blood tests and was approved for a three-month supply.

All kidding aside, I am very troubled by this long and cumbersome multi-step process. It should not be this hard to get PrEP. I am a 43 year-old professional and have the fortitude to push through the red tape. But I can assure you I would not done all of this when I was in my late teens or early twenties. I suspect that is still true of many young men and women today. That is unfortunate because these are the people who need access to this drug the most. As we all have heard, HIV infection rates are increasing among gay men who are 16-25 years-old.

I hope Kaiser changes its process for prescribing PrEP. I understand the need for the preliminary and routine blood work and on-going counseling about the extreme importance of taking it daily. But there is no reason that can’t be done by primary care physicians who often are the ones that know a patient best.

Monday, August 25, 2014

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.

Tuesday, August 12, 2014

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.


Saturday, August 9, 2014

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.
 

Wednesday, August 6, 2014

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!

Monday, August 4, 2014

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.

Friday, August 1, 2014

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.

 

Tuesday, July 22, 2014

Richard - After Finally Getting PrEP Green Light, Still Disheartened

by Richard
Raleigh/Durham/Chapel Hill
North Carolina

Seven months later I finally achieved my goal, but the journey was anything but easy or fun... That first blue pill I took on June 2 was the result of tons of labor, perseverance, frustration and doubt... I'm doing my part, but the medicine on the ground isn't.

I had seen online profiles including mention of PrEP for about a year, but it was only a trip to San Francisco in December 2013 during which I was confronted by PrEP billboards on the streets and buses and subway cars when everything clicked for me.

I hooked up with buddies there and asked what's with all the PR and for that matter PrEP. They said, YOU need to be on it. I returned home to Raleigh-Durham with the resolve to get on PrEP as fast as possible.

Seven months later I finally achieved my goal, but the journey was anything but easy or fun. And after getting the green light, I'm still disheartened.

I first addressed PrEP with my family doctor at a Duke University general practice in early January 2014, immediately after my vacation in California. I was told that she would not discuss this with me due to lack of knowledge and experience. She said I had to go to an infectious diseases clinic.

Intimidated and scared, I nevertheless contacted the ID clinic at UNC Chapel Hill where PrEP clinical trials have been underway for a while. The staff there asked whether I had seen a social worker yet to discuss my seroconversion and to talk about my insurance options, and when I informed them I am neg and want to start PrEP they told me that the ID clinic couldn't help me.

I then called the trials unit at UNC and after weeks of emailing with a staff member close to the MD/PhDs there, he told me that no one could help me, especially as there was no open trial for me to join. "Unfortunately the doctors in the UNC Infectious Disease Clinic are currently unable to prescribe PrEP, but they are discussing things and trying to figure out a way to make it a possibility there." (Only men of color were currently being considered.)

Next IU called the LGBT center in Raleigh, NC, and asked whether they had any local info on health providers with PrEP experience. They didn't know what PrEP was. Neither did the NC AIDS Network. I then called a different Duke ID clinic based in Raleigh where a HIV neg buddy was able to get Truvada; the staff told me:

We don't do that here. I then went back to my primary care clinic again and confronted another doctor, who replied via email:

"I'm afraid I won't be much help as this topic is not within the scope of my practice."

He then called the doctors at Duke's main ID clinic and managed to get a response: 4 physicians could see me about this. A referal was ordered but only after I patiently waited 2.5 weeks did I call to see where I was in the pipeline.

Apparently, I was in a permanent holding partner. They didn't know what to do with me.

After additional prodding, I was asked when I received my HIV+ diagnosis. When I made clear I am (to my knowledge at that point) still neg and was referred to Dr. So-and-So was I transferred to a nurse who then put me on hold 3 times only to tell me that "Oh PrEP is so new that we don't have that much experience with it." She made an appointment for me 4 weeks out, the Dr. then canceled my appointment for whatever reason, requiring me to call back and request the next appointment with the next available ID specialist.

Three weeks and a bunch of vials of blood later I was told I was qualified to start Truvada. 15 minutes after the script was filed, Walgreens called to say my prescription was ready to be picked up. Whoa. The pharma industry was instantly ready to sell me Truvada but the health professionals took 7 months of prodding to give me the green light.

WTF.

That first blue pill I took on June 2 was the result of tons of labor, perseverance, frustration and doubt.


Guys in major gay cities may attribute my experience to living in North Carolina, but the truth of the matter is that my major health institutions are major players in medicine and science, but PrEP still remains largely a mystery to both health professionals here and their staff members.

When I returned to my GP for a sinus infection a few weeks later, he sat in silence, reading the ID clinic's accessible report regarding my path to PReP. I asked him, what's it gonna take for you to prescribe this to men like me who are trying like hell to stay negative, reduce transmission rates and protect gay men's health. He told me his sad story of watching a closeted married guy with a wife and 2 kids die a gruesome death in 1982 from HIV-related causes and then said: only when Gilead or someone from the CDC or other medical institution trains him on how to prescribe PReP will he be ready to do so. How depressing and contradictory.

The final kick in the pants was a bill from Duke University.

My office visit to the ID Clinic, which entailed a basic physical exam and drawing blood, would cost me $407. Had my primary care doctor seen me, it would have been $15. I'm contesting this for the simple reason that I'm being penalized for my doctor's unwillingness to familiarize himself with PrEP. I also wrote him, explaining the situation and asking politely that he reconsider his position on this issue and PrEP for future patients.

After what I've been through, I'm not holding my breath.

I've also made mention of PrEP in my online profiles and have already discussed it with men who practice unprotected sex and men who are in serodiscordant relationships who were unaware of the option.

I'm doing my part, but the medicine on the ground isn't.

There is a huge structural problem we're facing and it strikes me that in places like North Carolina's Triangle and every other point on the map that isn't über-gay, it's gay men like myself who are willing and ready to educate people and push doctors to help them who will help make PReP a tool of use to all of us at risk.

It's an advocacy front that maybe many don't want to joint for the simple reason that Truvada as PReP may feel just like a license to screw safely, but I personally think the gains are terribly important and could transform our sexual lives in radical ways.

Sunday, July 13, 2014

Prepping for a difficult visit with the doctor?

NEW INFO RESOURCE

Click: PrEP and working through a difficult doctor visit


PrEP is a revolutionary medical advancement for preventing HIV infection. If you believe you’re a good candidate for PrEP, or at least want to discuss it, then you’re entitled to have an informed and respectful conversation with your medical provider.

Unfortunately some providers have been uniformed, ill-informed or even biased about this medical intervention. Because of the challenging stories we’ve heard from individuals, Project Inform wrote this pamphlet (with help from us at My PrEP Experience) to help you prepare for a visit to your medical provider to discuss PrEP, and to correct any false or misleading information you may hear in the process.

 This is a brief 'n easy-to-read brochure and friendly to your handheld device. 

Visit Project Inform for other great resources on PrEP.


Friday, June 27, 2014

Thursday, June 19, 2014

Personal Story: I finally got up the courage to seek PrEP in April 2013

I finally got up the courage to seek PrEP in April 2013. 


by K.W.
Austin, TX

There's a lot of detail I'm going to spare you, but essentially in 2013 I moved to a different group practice in Austin, TX. I established care with a new Doc at the beginning of 2013. PrEP started to come into focus for me as I discussed it with friends and did a lot of research. I finally got up the courage to seek PrEP in April 2013.


I look back 11 months ago, and realize how difficult it was for me to do this. It was nearly on par with coming out to my family in 2005.


So I called to make an appointment with my new Doc and the nurse immediately shut it down, said I'd probably do better to find a specialist. I asked for a referral within the group, and was told they didn't have an HIV care specialist. Lovely.

The nurse did me a favor. I went back to my old group practice, researched their website and booked an appointment with a new Primary Care Physician, w/ HIV Speciality. One week later, sitting across from my new Doc, he looked at me and said "You're number 2"... meaning, I was the second to request PrEP. He began the discussion of all that was involved and quickly realized I'd done my homework. That was it, pending labs results, my Rx was written.

What prompted me to share this with you?

It's been nearly a year- and to my knowledge, my old group practice lost (first hand knowledge) 4 patients over denial of PrEP. Today I called the Administration office of my old group practice to share my story. Somehow the phrases "Issues regarding your Standard of Care" and "Possible Denial of Care" got my phone call forwarded to a very interested party on the other end of the line.

I was forgiving, and spoke highly of my previous Doctor. I framed this as a "missed opportunity" x 4 for very well established Clinic that prides itself in it's depth and breadth of services. The person taking down my information said the Medical Director will probably be calling me back.

So please, if you hit a road block, do what you can to get your doc in the loop.


[EDITOR: If you have a personal PrEP experience you would like to share, send it to myprepexperience@gmail.com. Words or video.]

Tuesday, June 17, 2014

Are you ready to educate your doc about PrEP?



You may know more about PrEP for HIV prevention than your medical provider, and it may be up to you to provide a little PrEP ed.

Be PrEPared.

Read our short fact sheet.

Click here for a CDC brochure to help you prepare for talking to your doctor about PrEP.

The CDC recently released PrEP guidance for clinicians. Click here. And let your medical provider know about this important document (they may not.)

 

Saturday, June 14, 2014

Thursday, June 12, 2014

[VIDEO] Garland from Chicago on participating in PrEP research

In the video below, Garland from Chicago discusses his participation in the iPrEx Open Label Study and taking Truvada as a way to prevent HIV infection. The iPrEx trial was the first study to show that an antiretroviral drug (ARV) - normally used to treat people living with HIV - could also be used to prevent HIV among people who are HIV-negative.

In July of 2012, the FDA approved the ARV drug Truvada for the prevention of HIV.

Thanks to the iPrEx team, My PrEP Experience will be sharing a number of videos from iPrEx study participants over the coming days and weeks. Check back often, or like our partner Project RSP! on FB and follow along with all the new videos that way.



If YOU are taking Truvada as PrEP, we'd love to hear your story. You can share your experience in a video, or you can write something up. Whatever you want to do - we want to hear your experience - whether taking Truvada as PrEP was a good experience or a bad experience - or anywhere in between. Email myprepexperience@gmail.com and let us know!
 

Tuesday, June 10, 2014

He protects me. So does PrEP.


Learn more about PrEP right on this page - check out the info links to the right, and scroll down to read personal stories from folks using PrEP. Learn from them.

Read our short fact sheet.

Click here for a CDC brochure to help you prepare for talking to your doctor about PrEP.

The CDC recently released PrEP guidance for clinicians. Click here. And let your medical provider know about this document (they may not.)

Share this page with boyfriends, hook ups, friends, strangers, people at the table next to you....

Sunday, June 8, 2014

Power Bottoms Activate!


This is a BIG deal.


PrEP is the first HIV prevention tool controlled by the bottom/receptive partner. No negotiation needed.

Learn more about PrEP right on this page - check out the info links to the right, and scroll down to read personal stories from folks using PrEP. Learn from them. Read our short fact sheet.

Click here for a CDC brochure to help you prepare for talking to your doctor about PrEP.

The CDC recently released PrEP guidance for clinicians. Click here. And let your medical provider know about this really important document (they may not.)

Please share this link with people who may be interested.



Saturday, June 7, 2014

[VIDEO] Alejandro, his POZ partner, and using PrEP

[Video courtesy of Project Inform]


Alejandro has been with his partner for several years. They're a mixed status couple ... Alejandro is  HIV-negative, and his partner is positive. Here, Alejandro describes some of the things he and his partner thought about when they were deciding whether or not to use PrEP.



Project Inform is a great resource for info on PrEP. Click here.
 

Friday, June 6, 2014

John - "I feel more in control of my prophylactic decisions than I ever have before"

Not preaching or trying to convince anyone, just thought I'd share my PrEP story...

via John Sewell
Seattle, WA
I'm 46, which means I became a teenager the year we first got news of the "gay plague." I went to a military college, then spent 5 years in the Navy following that. I had a very few, discreet sexual encounters during those years, but mostly shied away because: 1) being gay was not socially acceptable, 2) I would have been kicked out of the Navy in disgrace if I had been called out, and 3) there was a mysterious killer affecting gay men with not much information about how it was transmitted or controlled.

Fast forward to 3 years ago.

I found myself head over heals in love with a man who was HIV+.

I had been infatuated with a few HIV+ men over the years, but had never before had to consciously decide if I wanted to be in an ongoing relationship with one. Love won out, and I made an agreement with myself that I'd be okay with a life of continued, consistent condom usage with this man. (I had been in the habit of regular condom usage until a monogamous partner and I had been together for six months, at which point I switched to condomless sex paired with continued regular testing.) At the time my boyfriend and I met, he was positive, but not yet on ART (as per CDC guidelines and his doctor's advice at the time.)

A year later, the CDC changed their recommendation on when to start ART. My boyfriend, on the advice of his doctor, started taking Atripla and, within 3 months, had an undetectable viral load. Once he reached that point, he and I stopped using condoms with each other. A year or so after that, I started on Truvada.

We are not monogamous, and I myself have enjoyed going to bath houses in the past and currently.

I get tested almost monthly as the result of a PrEP study and an HIV vaccine study I participate in. This winter, I tested positive for gonorrhea. This was the first time I'd ever tested positive for an STI. I was treated immediately and followed the advice of the STI clinic in regards to notification and temporary abstinence. Because I had discussed this possibility in advance with my partner and health care providers, it did not shock me or destroy my ego. I felt equanimity about it.

Where am I at mentally today?

I feel good about my choices regarding my sexual, mental and social health (if I can be so bold as to make those three categorizations). I feel more in control of my prophylactic decisions than I ever have before.

I think I've done a reasonable, informed job of preventing myself from becoming infected with HIV, but I'm also not afraid that my life will end if I do become infected. That's a welcome change! I would like to avoid other STI's, but I also understand that I should balance that with finding joy and pleasure in life, not hiding in the closet.

I'm sure not everyone would agree with my approach. I know there are both individual conscience and community responsibility angles to this discussion which are complex and sensitive. I'm happy with my current choices, and I continue to try to remain both well informed and open to modifying my strategy as we learn more about both HIV, other STIs and gay health in general.

Friday, May 30, 2014

Rico - "Judge me if you want and call me a Truvada whore, I don't care"












by Rico
West Palm Beach, Florida

I have been on Travada for 4 months now. My primary care giver who is gay and have been going to for 30 years didn't know about PrEP which shocked me. He then referred me to an infectious disease specialist who shook her finger at me about condoms and the need for them.

I just looked at her and said "I'm 54 years old and HIV negative and I'm here for the drug, are you going to fucking give it to me?" 

There seems to be a never ending need to cling to the past, one which I might add is not working so well for the "old school" weather it's straight or gay, the infection rates continue to climb.

I'm thrilled I met someone on a hookup in NYC who talked to me about it which started my journey to get on it. Since being on the drug I talk to everyone about it, judge me if you want and call me a Truvada whore, I don't care.

The only side effect I have experienced were dreams and they have faded over the months. Other than that, nothing.

Happy in Florida.
Rico

Tuesday, May 27, 2014

VIDEO: Eric's 34th Day on Truvada as PrEP - No Regrets and Peace of Mind

via Eric McCulley
Atlanta, Georgia

I don't have any regrets, but what I do have is peace of mind. And that is exactly what I was looking for with this medication. 

I feel great, I feel empowered, and I feel in control of my sexual health and my health in general.

video

Eric was recently interviewed about PrEP by the NPR affiliate station in Atlanta.
Check it out here.

Tuesday, May 20, 2014

That's What He Said Part 2 - Jody's Persistence (and Community Support) Pays Off

“Come in and see me. Tell me more and let’s get this fixed,” he said....


...While my experience with Doctor Nameless wasn’t ideal, it was eye-opening. If it had to happen to someone, I’m glad that was someone who had the tools, resources, and voice to find a better solution and seek a change.


by Jody Wheeler*

When I say “bitch” I didn’t mean randomly. Facebook is mostly just cat pictures, traffic complaints and filtered selfies, after all. Noise not signal.

Yet there are some great groups on Facebook, pages on a wide variety of issues, run by people who interested in sharing information, providing support, and making things better. PrEP Facts: Rethinking HIV Prevention and Sex, is one of those Facebook groups.

PrEP Facts was started by Damon Jacobs, a therapist and PrEP activist from New York City. I’d found his group it while researching PrEP and Truvada. While often raucous and combative, that energy comes from its passionate membership — doctors, educators, epidemiologists, regular folk — deeply committed to getting the word out about PrEP. Information, resources, and support are all to be found there. I knew I needed to post there.

On-line, I recounted a (far briefer) version of my visit with Doctor Nameless. At the end of my tale, Iasked the group for both help in finding a better doctor and more information on bone-density loss, the one aspect of my recent craziness I wasn’t up on. I didn’t give Doctor Nameless’ real name out in the public forum. His medical group — UCLA Health — that I eventually stated.

In spite of my experience, I wasn’t looking to start an internet pogrom of torches and angry villagers against the man. It was important to get the facts out, to find out if what I went through was a common experience, but not to lambast someone by name, just as an example. I did decide that, on a case by case basis, if appropriate, I would disclose his name.

The response from the PrEP facts group was overwhelmingly affirmative. Not just posts that commiserated with me, but actual, hands down great advice and recommendations. The names of good doctors from across the city poured in. Some people even recommended I fly to their city to see their doctor or go to the clinic they worked at. It wasn’t lost on me that was something I might be able to swing, but what about all those other folks that couldn’t?

The thing that most surprised me were the numbers of folks who told me that Doctor Nameless’ response was unethical, bordering on malpractice.

I hadn’t thought about it in those terms. Annoying? Sure. Maddening, no doubt. Bang-off-the-walls-and-jump-in-a-lake-of-ice-cubes? It felt that way. But the ethical or malpractice suggestion gave me pause.

The American Medical Association says that, as patients, we have the:

“…. right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives. Patients should receive guidance from their physicians as to the optimal course of action…The patient has the right to courtesy, respect, dignity, responsiveness, and timely attention to his or her needs.”

which translated as requiring patients to receive correct information, to treat our concerns as real, and not to have a physician substitute their values for our own. For mine.

Another group member compared what happened to what some women have experienced from certain doctors and pharmacists when they ask to go on the Pill. While I’m still not convinced Doctor Nameless engaged in malpractice, in light of that comparison and the AMA’s standards, I don’t think what happened was all that ethical.

The most surprising thing that happened as a result of my post was that another physician from UCLA Health reached out and got in contact with me, Dr. Raphael Landovitz. Landovitz is a researcher and practitioner, the co-director also Co-Director of the UCLA CARE clinic, which is specifically devoted to the care and prevention of HIV. He’s also been at the forefront of implementing PrEP across Los Angeles.


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