Rabu, 29 April 2015

"I have a responsibility to volunteer in the Next-PrEP study"


My support for PrEP up until now has been solely offered sitting at this keyboard.

Now, it's time to step back into the street one more time.

 by Daniel MacDonald


I knew I was gay since I was 13.

This was back in 1977, so being gay wasn't as socially acceptable then as it is now, but I didn't care even then. I liked guys, that was that, and I didn’t care who knew it. When you knew someone who was gay, well, “gay” was always said in a hushed whisper. I lost my virginity that year to a much older man I would spend the next nine years with. The sex was a fantastic event with him every single time, and being a healthy teenager, my sex drive was nonstop. We would spend the day shagging like dogs, and because we were in an open relationship we would invite others to come join us for the naked festivities.

Things would take a dramatic turn when a scary illness and rare cancer began to show it's face before I hit 25 years old. The flow of information stunk at that time, and there was far more misinformation than actual fact being shared, and it would quite a while before the disease had a name (and we all thought it sucked back then, too.) Great. Now anyone in the family who didn't care for my being a big ol' homosexual now had ammunition. If you don't settle down and get a girlfriend you're gonna get that gay plague and die. It'll be God's punishment for what you're doing.

Please. I tried girls, and the only way I enjoyed them was if they brought their boyfriends along for the fun and we had a bisexual romp. I’ve given more than one curious couple a night to remember for both of them. Told you: I'm a total horndog.

The name of the gay plague changed to something a bit more acceptable, but it was no less scary. My friends were dying, nobody was helping us at any level, and the only protection we had at our disposal if we didn't want to become HIV positive was to wear a condom. Now, let me tell you a bit more about me: I'm a big guy. When I finally stopped growing, I landed on 6 foot 6 inches. Nature also blessed me with a nice set of muscles on this gargantuan frame, and an appropriately sized cock - a true 10 inches and 7 around. That made me the most popular guy at the dance - a fact that I used to my advantage in my personal sex life, as well as rounding up tricks I "escorted" and a brief career in porn. All the sex I want? For money? And how many people will be watching? Well, sure – what the hell. Count me in. My most memorable scenes are probably in that box in your attic.

Finding a condom that I could actually get on was a ridiculous lesson in futility. When I could find one that had possibilities, it felt like my cock was being mugged.

Need a picture? Think of stuffing five pounds of sausage in a three-pound casing. I got them on - barely. They were painful, hard to roll down, and slid off while I was fucking. So the fear of HIV dictated a very uncomfortable, unsatisfying sex life for years. And because I couldn’t get a condom to fit me, I went from being versatile to total bottom. Sex was losing that wonderful fascination and becoming more of a scary chore than anything, and I funneled all that pent up sexual energy into HIV/AIDS advocacy; a passion that's followed me to this day. If there was a demonstration, speech or action taking place that I could get to, I was going to be there. I'd watched too many of my friends die, and too many senseless seroconversions involving people who didn't know all the facts about HIV.

Flash forward a few years to the mid-1990s. The man who took my virginity is out of the picture and now I'm with a wonderful man who I love intently. He's HIV positive--a fact I knew about him before I could spell his last name. And I'm HIV negative.

Together we had to find ways of discovering a satisfying sex life without my seroconverting. The meds of the day weren't what they are now, and I knew from my boyfriend’s complete transparency around his HIV status that he was sporting a big viral load. The word “undetectable” in regard to his HIV didn’t come up much those days. While there was no reason for us not to have sex, it came with a lot of caveats. We tried mutual masturbation. We tried me on top wearing a rubber. We tried him on top, wearing a rubber, which totally killed it for him.

Could you stay in the saddle with the question of "what if the condom breaks?" lurking in the back of your head? He couldn't either; especially on the day it did break.

He pulled out, and as was his habit he’d inspect the condom and damned if it didn’t happen. We spent the next few days waiting for my HIV test results and my boyfriend was in a morbid funk, and understandably so. He was overwrought with guilt at the prospect of my contracting HIV from him, and I had resigned myself to getting my results and hearing that I was positive. It was nobody’s “fault” and if it happened, it happened; so be it. The test came back negative; as did all the other subsequent tests I took afterward as a safeguard. During every single wait period for results, my heart broke for my boyfriend and the self-imposed guilt he was swimming in. Finally, we tried him watching while I fucked with other negative guys, which was probably the worst, most alienating idea of them all. His participation in those romps wasn’t nearly what it needed to be, and it wasn’t satisfying for either of us.

You get the idea? We loved each other but our sex life at the start left a lot to be desired
These days, meds are better if you're HIV positive, and condoms come in more varieties. And I'll tell you a secret: I don't always use them. I know that’s blasphemy for me to say as an HIV/AIDS advocate but there it is. Sometimes the waves of testosterone come crashing ashore, and common sense goes out with the tide. I still have some issues finding ones that will fit, and female condoms aren't as universally accessible as I'd like. I have no problems negotiating whether or not we use them when the time comes. If I'm with someone who says they're negative I expect them to prove it; I'm not naive enough to take someone at their word. It takes more than a guy giving me a hardon before the gloves come off - if you get the drift.

Enter PrEP.



What an out of the box thought, right?

 Lots of people aren't using condoms, and these medications - if taken as they're supposed to - have the potential to dramatically decrease the possibility of becoming HIV positive.

According to some studies, PrEP can be 94% effective--which makes it more effective than condoms. Now, imagine the efficiency in preventing HIV if someone is on a PrEP regimen and using condoms. I've read all the studies and I know that number is constantly in dispute depending on whom you talk to.

So I've signed up for the Next-PrEP study and I’ve been accepted. For the next year, I will be taking a combination of three pills but will have no idea which particular arm of the study I’ll be in, so there is a minimum of one placebo and a maximum of two active drugs as part of my daily routine.

I met with the study directors from day one, and every one of them has been wonderful. The flow of information is amazing; they really leave no question unanswered. I was given a full-on explanation on everything from how HIV works, to what medication is designed to do what, to a soup to nuts explanation of the study’s goals and my role in helping get their data to the finish line.

Will there be side effects? There just might, and I was given a ton of documentation on what I might have to work through. But that's not too much of a concern as they usually pass over time as you continue to take the meds. There are layers upon layers of people and boards monitoring the safety of all participants, so I know I won’t be thrown in the deep end all on my own, or that I won’t have any safety net if I do have something go awry while I’m participating in the study. There are also regularly scheduled doctor visits and tests that will keep an eye me at all times. All of the people I've met in this trial couldn't have been more friendly and helpful.

And my sex life during the study? I’m not expected to do anything different – so keep on, keepin’ on. Which means, well, usually busy. (I’m still that horndog that I was when I was a kid.)

I know these pills aren't going to make me 100% bulletproof against HIV--nothing short of complete celibacy will do that. But consider this: the HIV prevention message of "always use a condom" is over 30 years old. It’s the safe sex equivalent of a warning on a pack of cigarettes. Everyone knows the message is there, they know what it’s saying. They know if they don’t follow the directions, something bad will happen, but they will still buy a pack of smokes if they want one. Or they’ll have bareback sex knowing full well they might regret it when it’s time to get their next HIV test results – if in fact they are even testing. I can’t count the number of times I’ve been chatting openly with people about HIV and testing and I see that hang-dog expression on their face when they tell me that they haven’t tested in a long time - or at all. Or they can’t remember their last test.

People change, lifestyles have changed and there's a new generation coming up that hears the message of safe sex without the urgency that I did when I was their age.

My son, who's also gay, has been sexually active since he was 15. Up until the time I adopted him, he thought of HIV as a mythical beast that wasn’t a threat to his existence. He’d never heard of Hepatitis B or C, and didn’t know much about STD’s. As a father, the possibility of medications being readily available for him as an effective prevention measure against HIV is something I find very exciting and promising. And you better believe he knows how to put on a condom now, as well as where to find them free all over the city (if he’s not raiding my stash).

The very definition of safe sex is changing, and it needs to.


Gay men aren't using condoms, and it's not about finding a new message to make their importance more prevalent. My son had been having a rowdy sex life a year before I adopted him, and he had no clue how to put a condom on. The message needs to be changed to convey that, while condoms can be effective, there's another way to ensure your protection. There are those in power who preach that a pharmacological solution to HIV is a disaster and will try to make you believe that everyone who's got access to PrEP will toss their condoms away for good. They'll try to tell you that Truvada and PrEP is a magical pill solution that does nothing more than give up on gay men. I've written page after page making sure you don't buy their half-baked cake.

Consider this: I've had a very active sex life for the last 36 years, and I'm not even 50. I've been a male prostitute, gay porn performer, live sex performer, and I'm still an HIV/AIDS advocate. There's been tons of great sex in my life, and there's probably a ton more before I hang it up for good (hopefully when I'm in my 90's). There is also no logical reason why I'm still HIV negative. I have no explanation on why I've never contracted a single STD. I also know I'm not bulletproof either, buster. More than three decades after I watched my first friend die from AIDS, we still don't have a cure.

To me, I have a responsibility to volunteer in Next PrEP, even though I’m going to be one person among many who have stepped up for this trial. I need to be there, as a gay man, a father, an HIV/AIDS advocate, and as a journalist who’s got an active, fulfilling sex life.

My support for PrEP up until now has been solely offered sitting at this keyboard.

Now, it's time to step back into the street one more time.

Selasa, 28 April 2015

"Today, I no longer need PrEP, but I remain very grateful for it."

by James LoDuca

[James is Vice President, Philanthropy & Public Affairs at San Francisco AIDS Foundation. This was originally published on Huffington Post. Check out SFAF's fantastic PrEPfacts.org - a wonderful resource on PrEP.]

PrEP may not be right for everyone, but everyone deserves the chance to choose.

James, left, pictured with Chris, one of his closest
friends who helped him through his divorce.
Two years ago, something unexpected happened. I was seven years into an incredible relationship. We married in 2008 during the brief window when it was legal for same-sex couples to wed in California, and my husband and I became poster boys for marriage equality (really -- our wedding picture was on a poster). We initiated the process of adopting a child. Never in my life had I been so happy.

Then, suddenly, my husband shared news that I hadn't seen coming: He wanted something different and would be filing for divorce. My world crumbled. The next six months were the most painful of my life. I couldn't sleep, lost my appetite, and went numb inside.

On the outside, I refused to show it. I started dating, went out to bars, and even made some decisions in the heat of the moment that I normally wouldn't. I was determined to convince the world (and myself) that I was fine. In retrospect, it was a fairly common response to intense emotional trauma.

My doctor wasn't fooled. He referred me to a therapist to start the hard work of healing. He also prescribed Truvada, a drug that protects against HIV infection. It's a groundbreaking HIV prevention strategy known as pre-exposure prophylaxis, or PrEP, which has been proven highly effective when taken correctly. PrEP is an especially good option for people during "seasons" of risk, or for anyone who struggles with perfect condom use 100 percent of the time.

AIDS Healthcare Foundation (AHF), the largest U.S. provider of HIV/AIDS services, is spending millions trying to position PrEP as controversial and deny access for people like me. Following a failed attempt to block FDA approval, its current tactic is to demonize the drug and shame its users. On social media, rhetoric from AHF's campaign against PrEP often crops up in posts on the topic. It's strikingly similar to the "controversy" that initially accompanied FDA approval of oral contraception for women. In the early days, single women who sought the pill to prevent pregnancy were labeled "whores."

When it comes to HIV, the idea that condomless sex with PrEP can also be protected sex is novel. As time passes, it will become less so. This isn't the first time AHF has fought progress by taking a position that ignores scientific evidence and sets it apart from the HIV/AIDS community. Some suggest the organization manufactures controversy to keep its name in the headlines and stay relevant.


Progress isn't possible when shame is present. It's time for a more humane and loving approach. We must come together to foster compassionate dialogue grounded in scientific evidence about all of the available options to protect ourselves and take care of each other. That is the only way we will end HIV transmission.

Research has repeatedly linked shame and stigma to the very behaviors that put people at risk in the first place. That was true in the case of my divorce, and as my healing progressed I overcame the shame and stigma that accompanied it. I got an STD during my personal season of risk, which was promptly identified and treated. PrEP doesn't protect against STDs, but it does increase opportunities to identify and treat them, because PrEP requires regular screening.

PrEP may not be right for everyone, but everyone deserves the chance to choose. Nobody should be allowed to take that away. We must work together to educate, empower, and support each other, and beat back dangerous attempts by any person or organization attempting to block access or shut down dialogues. Today, I no longer need PrEP, but I remain very grateful for it. Just like I'm grateful for all the friends and family who provided the unconditional love and support that I needed to help get back on my feet.

There's a sort of beauty in falling apart. When you put back the pieces, you get to build a better version of yourself. In my case, that version did not include HIV infection. I can't help but think that if AHF had its way, PrEP would have never been approved, and my story would be different.


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

Minggu, 26 April 2015

CDC "Cheat Sheet" on PrEP - Fast Facts for Providers

Check out CDC's Interim Guidance on PrEP for providers in this handy "cheat sheet" below. For more info on PrEP via CDC, click here.

click to enlarge
 

Sabtu, 25 April 2015

[VIDEOS] Ken Almanza Captures the Early Days of His PrEP Experience

Day 4: My PrEP Journey: Truvada hasn't really given me any major trouble so far. My body seems to be tolerating it well.

I just incorporated it with my regular allergy pills I was already taking.

No big change. Stay tuned ...


Ken Almanza does HIV counseling in Los Angeles, and has recently begun taking Truvada as PrEP. He has been documenting his journey with short videos on his FB page - you can see the first three below.

Follow him if you want to  keep up on his PrEP experience. He also posts great info on PrEP as well.

And, he's charming. And guapo. So there's that.



PrEP – How did I end up here? [Part 2 of 3, by Marc-AndrĂ© LeBlanc]

bv Marc-André LeBlanc
Gatineau, Canada

• Multiple sex partners? Check

• History of STIs? Check

• Partners of unknown or HIV-positive status? Check

• Inconsistent condom use? Check

This is the second installment of a three-part series.
Click here to read the first installment. Click here for Part 3.

On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP). How did I end up in this situation where I feel like I need PrEP? 

As I mentioned in my previous post, a look back at the phases of my sex life gave me some clues about why PrEP makes sense for me now. After more than 20 years of being sexually active, I only recently found myself veering away from perfect 100% condom use.

How did that happen?

Ironically, this is in part because I’ve been working in HIV for 20 years, including the last 10 years focussed on tracking biomedical HIV prevention research. I know what the research is telling us about HIV transmission. I know what proportion of new infections is driven by people who are undiagnosed. I know what undetectable viral load means for transmission risk.

I started serosorting, but not in the conventional sense. More and more, I’ve been dividing guys up into 3 categories.

1. The first category is small. With HIV-negative guys I know and completely trust, we arrive at a form of negotiated safety—if we have been tested for HIV and all STIs recently, and not yet had sex with others, we usually have condomless sex.

2. The second category has been steadily growing—positive guys. We have discussions about treatment, viral load, STIs and decide how to proceed from there. Sometimes without condoms.

3. The third category is basically everyone else—HIV unknown or undisclosed, and HIV-negative men I don’t know well. I consider guys from this third category as potentially being in the acute infection phase, whether they know it or not. This is the category of men with whom I am most adamant about condom use. All too often, their prevention strategy is dubious at best (e.g., “r u clean? how big r u? wanna bb?”). If I see another highly stigmatizing "disease free"/"no poz" message on an online profile, meant to be some kind of stand-alone, ill-informed HIV prevention strategy, I might reach through the screen and cyber-throttle someone.

So gradually, I’ve found myself feeling much less worried about having condomless sex with a positive guy after a conversation with him about treatment and viral load and STIs than about having condomless sex with a guy who says he is negative, but could be in the acute infection phase with sky-high viral load without even knowing it.

Paranoia? Rational, effective, evidence-based risk-reduction strategy? Both? You be the judge.

But let’s be honest. I also started “slipping up” more and more often because, well… sex feels better without condoms. *gasp* That’s right folks. Sex without condoms feels freaking amazing. You heard it here first.

So while I still maintained a relatively high rate of condom use, I found myself having condomless sex every once in a while. Of course, I also know how effective inconsistent condom use is over time (i.e., not very).
 
An illuminating peek inside the Little Black Book

Three years ago, I started to keep track of my sexual encounters in a proverbial little black book. (OK fine, it’s blue and has a Global Campaign for Microbicides logo and a Rectal Pride for Microbicides sticker on it. It’s super pretty and seemed appropriate). Every time I have sex, I write down what we did, what I know about my sex partner’s HIV status, and whether or not we use condoms. Yup, every time for 3 years. I do this partly so I have very accurate information at my fingertips to relay when I get tested for HIV and STIs. Partly so I have very accurate information at my fingertips when I start to worry. I can look at my list since my last tests and say: look, you had this many encounters, this is what you did with whom, this is how often you used condoms, and this is what you know about his HIV status. Sometimes that helps alleviate the occasional panic attack and insomnia. Sometimes.

I had never seen myself as being “high risk” for the first 20+ years of my sex life. But I’ve been working in HIV for 20 years. So I know the behavioural characteristics of “those people” at high risk. Armed with about 3 years of hard data about my own newly evolving behaviour (i.e., my stylish little blue book), I decided to look at it objectively.

• Multiple sex partners? Check

• History of STIs? Check

• Partners of unknown or HIV-positive status? Check

• Inconsistent condom use? Check

Well then. It’s hard to ignore what this spells.

I like to think I’m at least moderately intelligent. I know how HIV is transmitted. I know how effective condoms are.

I like to think I understand the consequences and the stakes. Yes, people living with HV are doing much better today. But I saw my dad die of AIDS in front of my eyes. I saw countless other friends, colleagues and clients become HIV-positive or die of AIDS. That leaves an impression, to say the least.

I like to think I’m a responsible person. I get tested frequently. I stay informed.

I like to think I have high self-efficacy. I have several years of experience using condoms consistently, and I am more often than not the one wearing the condom, so little to no negotiation is required.

I’m not depressed. I never drink. I don’t so drugs. My judgement is not clouded by any of those.

I’m not in denial. I know that the combination of inconsistent condom use, multiple partners, history of STIs and having partners of a different/unknown HIV status is a very strong predictor of seroconversion over the course of a few years.

If all of this doesn’t make me an ideal candidate for consistent condom use, I don’t know what more it would take, short of using Super Glue to permanently bond a condom to Mr. Happy.

Yet here I am.

So as a smart, responsible, well-informed, sexually active gay man with good self-efficacy and good access to healthcare and accurate information, I’ve come to the conclusion that PrEP makes sense for me at this point in my life. I don’t know how long this new “PrEP phase” will last. But I am glad it is available to me while I need it.

***

There are a million other things I have to say about PrEP. Well OK, maybe only half a million. But luckily others have already addressed many of them, and have done it so eloquently. I encourage everyone to check out the following remarkable first-person accounts:

• Len Tooley did a series of interviews on PositiveLite.
• Jake Sobo has been writing a whole series of articles on his blog, “My Life on PrEP”.
• Several other first-person accounts can be found right here on the “My PrEP Experience” blog.

Len and Jake are so friggin’ smart and insightful and articulate, I want to marry both of them. It has been a tremendous source of help and support to read the thoughts of everyone who shared their stories publicly. A big hairy thanks to Jim Pickett for starting the “My PrEP Experience” blog because he recognized that amidst all the heated debates and discussions and policy decisions about PrEP, we weren’t hearing the voices of real-life flesh-and-blood people actually using PrEP.

Kamis, 23 April 2015

Anon in Connecticut: "My fear before was being fed by all the misinformation on the internet."

Just got my first bottle of Truvada thru my insurance... I feel protected and liberated.



by Anon
Hamden, Connecticut

Just got my first bottle of Truvada thru my insurance. My copay was only $20.

I should have done this a long time ago. It took me 1 yr to decide to go to my specialist who removed all my fears about side effects. He wasn't concerned at all that there will be side effects since he has many patients taking it for several years.

My fear before was being fed by all the misinformation on the internet, unfounded half truths, and I was stupid enough to listen to those fears and in the meantime I know I could have become HIV+ while waiting and waiting to make that decision to start protecting myself...

Now I have this pill in my hand, I feel so relieved, I feel protected and liberated. Of course, I still plan to use condoms... but we have to be realistic...

When we fall in love.. we do get carried away... that's where this pill comes in for protection.


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

 

Community Talk Show in Chicago May 22 - Can a Pill Revolutionize Sex for Gay and SGL Men of Color?


Join your hosts – social guru David Dodd and award winning vlogger Ken Like Barbie – and special guests 4 an all-ages, interactive, FREE community talk show to discuss sex, love, lust, and relationships.


Learn about a fresh, safer-sex option for ourselves and our partners.

Featuring dynamic performances by Vocalist, Poet, Actor and Humorist ButtaFlySouL, star of ButtaFlySouL for President. Don’t miss his beautiful spirit!


Community. Sexy. Fun. Free. Healthy. Real.

Appetizers from the Hearty Boys! Raffles!

DETAILS:
Get Ready. Get Set. PrEP!
Date: Wednesday, May 22, 2013
Time: Reception with light appetizers begins 6:00 p.m., show begins 7:00 p.m.
Location: Center on Halsted
3656 North Halsted in Chicago
3rd floor, Hoover-Leppen Theatre.

This Project RSP! community forum has been brought to you through a collaboration between Blackstone Avenue Marketing, Clubhouse Productions, Gilead Sciences, High Society Entertainment Group, John Stroger Hospital, K Dock Media, My PrEP Experience, National Youth Pride Services, PrideIndex.com, Rails Marketing Group, United Black Pride, and AIDS Foundation of Chicago.

Selasa, 21 April 2015

Singapore Doc: "I remember the very first patient to whom I prescribed PrEP."

Many of my patients find it difficult to broach the topic of PrEP.

Most of them share  with me that they are worried about being judged.

I try to assuage this by making the  discussion factual, objective, scientific and professional.


by Dr. Tan Kok Kuan
Singapore

I am a doctor practicing in Singapore. We are an island state located in South East Asia known for its squeaky clean image, economic prowess and draconian anti-HIV  laws. Singapore’s official reported prevalence rate of HIV is 0.1%. However, based on  good evidence, many people including myself believe that the real figure is closer to  0.3%.

I wrote a blog article on PrEP in 2010 when evidence of its efficacy first started to become apparent. I was at first rather skeptical. Not of the effectiveness of the treatment but rather of its potential uptake. I was wondering how to approach this topic with my patients.

I was worried that if I brought up the topic of PrEP to my patients, they would misconstrue my intentions as accusing them of being promiscuous or suggesting that they are knowingly putting themselves at risk of HIV.

Fortunately my fears were unfounded. Many of my patients were very pleased to  learn more about PrEP and even if they were not ready to start on it, they at least were  appreciative of the knowledge of this option open to them.

I remember the very first patient to whom I prescribed PrEP.

He was a heterosexual male  in his 30’s and had a HIV +ve girlfriend living in another country. He would visit  her frequently and each time he went, he took PrEP. This went on for a while and  they eventually got married. Now, he is on PrEP daily. True love and Truvada does conquer all.

Since then, I have prescribed PrEP to many patients. Although I routinely warn them  of the potential side effects, I must say, to date, the worst side effect I have seen in my  patients is some mild nausea. I am not even sure if the nausea was psychosomatic.

A common concern brought up by my fellow medical professionals is that prescribing PrEP will make patients more promiscuous. I personally have not found that to be  the case. In fact, all of my patients have reported that their sexual practices before and after taking PrEP have not changed.

I also find that my patients who bother to take the time to have a conversation about PrEP with me are people who are aware and realistic about their sexual habits and have a sense of responsibility to their own health and that of the people close to them.  So it seems to me patients on PrEP are already self selected to be the type of patients who will not throw caution to the wind  and take unnecessary risks because they are on PrEP.

Many of my patients find it difficult to broach the topic of PrEP. Most of them share  with me that they are worried about being judged. I try to assuage this by making the  discussion factual, objective, scientific and professional.

By focusing on the facts, the science and the data, I find that patients will naturally start to feel more at ease. Instead of taking a authoritative role and dictating to patients whether they should be on PrEP or not, I prefer to take a consultative role. I would detail out the benefits  and risks of PrEP, allow them to clear whatever doubts they may have then make a  decision with them, not for them.

I read with great interest the many stories on this blog. It is heartening to know that  there is so much financial support for PrEP in the USA. Here in Singapore, Truvada  costs SGD$30 (about USD$23) per pill and it is all out of pocket expense. I also find it heartbreaking to hear of medical professionals who give patients a hard time with regards to PrEP.

From the current evidence, it looks like we are inching our way towards a cure  for HIV. I do hope we will be able to realise this in my lifetime. In the meantime, we must not forget that we are fighting  a war and HIV is the enemy.

We must use everything at our disposal to win this war. PrEP is a weapon, use it.
This is a summit about humanity -- a future free of HIV/AIDS should be made available to each man, woman, and child around the world.

--José M. Zuniga, PhD, MPH, President, International Association of Providers of AIDS Care (IAPAC)
Dr. Tan runs a medical clinic in Singapore focusing on HIV and STDs. He  also blogs on HIV, STDs and other Sexual Health topics. Check it out at:  www.drtanandpartners.com


[EDITOR: If you are a doctor who prescribes PrEP and  would like to share your experience and perspective, send us your story to myprepexperience@gmail.com. Words or video.]

 

Sabtu, 18 April 2015

PrEP – Is this just a phase I’m going through? [Part 1 of 3]

bv Marc-André LeBlanc
Gatineau, Canada

This is the first installment of a three-part series. Click here for Part 2. Click here for Part 3.
On April 5, 2013 I took my first dose of Truvada as pre-exposure prophylaxis (PrEP).

So many questions were swirling in my head at that point, and had been for weeks and months. As I was about to swallow my first pill, I gazed outside the window and wondered…

• How did I end up in this situation where I feel like I need PrEP?

• How is it possible that it was this easy for me to access PrEP when so many people don’t have access to ARVs to stay alive?

• How did I go from being a major PrEP skeptic 4 years ago to actually taking PrEP now?

• What would people think if they knew I was taking PrEP and therefore by implication putting myself more at risk than I’d even been willing to admit to myself?

• Will I be taking this pill every morning for the rest of my life?

• Will I start taking more risks than I did before?

• Will I experience side effects?

• When will this damn winter end? I know this is Canada and everything, but enough already with the grey skies and slush and dreariness.

To find clues about how I got here and how long I might need PrEP, I took a sexy stroll down memory lane. Or as I like to call it…

My Sex Life: A Tale of HIV Risk in Five Phases

Phase 1: “In the Beginning”, lasted 8 years. I grew up in Moncton NB, a small town on the East
coast of Canada, and stayed there until my mid-20s. Let’s just say there were not very many opportunities to participate in activities that would have put me at high risk. This was pre-interwebz and smartphones, folks. In a town with one gay bar. I don’t do bars. Ever. All my experiences were very low risk. I didn’t even want to experiment with high risk behaviours. I was much too scared. I watched my father, an out gay man, progressively get sicker and eventually die of AIDS, desperately gasping for breath in his last hours, right in front of my eyes. I was 18 when we learned he already had AIDS and he died when I was 20. Trust me, this leaves an indelible impression on a young gay man who is just beginning to have sex, and who has not even come out yet. I did come out very shortly thereafter, and I ended up in a long-term relationship pretty much immediately.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 2: “Spreading my Wings”, lasted 9 years. I moved to the Ottawa/Gatineau region where I still live now, a sprawling metropolis compared to what I’d known until then. I was here by myself for a while. I decided it was time to explore and play around. Even after my partner joined me. But I was still not at high risk for HIV. This was largely because I was frankly uninterested in activities that would have put me at high risk. Partly out of personal preference. Partly out of concern about “bringing something home” to my partner (oh ya, I was suuuch a considerate adulterer!). Partly because at this stage my fear of getting HIV still considerably outweighed any desire to do anything even moderately risky.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 3: “Letting Loose”, lasted 1.5 years. After the end of my 14-year relationship, I decided it was time to explore and play around even more. Not that I’d been an angel before. Far from it. But now I was ready for some adventure. Through it all, I can honestly say that I managed to maintain absolutely 100% condom use. Each and every time. How did I manage that? For one thing, while my fear of getting HIV no longer outweighed my desire to explore activities that happen to be more risky, it still was strong enough to reinforce my resolve around condom use. It also helps that negotiating, convincing, or cajoling are rarely required when you’re almost always the one actually wearing the condom.

PrEP would have made very little sense for me then. That would come later.

Phase 4: “The Dark Ages”, lasted 1.5 years. Through a very severe depression, there was nothing going on. Nothing.

PrEP would have made no sense for me then. I didn’t even need condoms. That would come later.

Phase 5: “The Renaissance”, lasted 5 years. I was back to a life of adventure as a single gay man in a mid-size city, and on very frequent travel. At first, I still managed to maintain 100% condom use. But gradually, over the course of the last 2-3 years, I started to veer away from 100% condom use for reasons that I will explain in my next installment. As a sneak preview—it has to do with the current state of knowledge about HIV transmission, and, well… because sex feels better without condoms! *GASP* Stay tuned for the shocking next episode.

So now, for the first time in my life, at the age of 43, and after 25 years of active sex life (minus a brief depression-induced hiatus), PrEP makes sense for me. How long will this new phase last? How long will I be on PrEP? I don’t know. But luckily it exists and I can access it.

***

There are a million other things I have to say about PrEP. Well OK, maybe only half a million. But luckily others have already addressed many of them, and have done it so eloquently. I encourage everyone to check out the following remarkable first-person accounts:

• Len Tooley did a series of interviews on PositiveLite.
• Jake Sobo has been writing a whole series of articles on his blog, “My Life on PrEP”.
• Several other first-person accounts can be found right here on the “My PrEP Experience” blog.

Len and Jake are so friggin’ smart and insightful and articulate, I want to marry both of them. It has been a tremendous source of help and support to read the thoughts of everyone who shared their stories publicly. A big hairy thanks to Jim Pickett for starting the “My PrEP Experience” blog because he recognized that amidst all the heated debates and discussions and policy decisions about PrEP, we weren’t hearing the voices of real-life flesh-and-blood people actually using PrEP.

Jumat, 17 April 2015

Anon in WeHo - "Being on PrEP put the control in my hands."


I'll never know if being on PrEP prevented me from contracting HIV, but I'll always be grateful that I made the decision to start taking it.




by Anon, West Hollywood

Here is my PrEP experience.

I started taking Truvada about six months ago. I'm single for the first time in 13 years, and sexually active. I did a lot of research, through the internet, mostly through the "PrEP Facts" Facebook group. My general practitioner is also a specialist in the treatment and prevention of HIV, and was able to help me navigate through the information.

I've had virtually no side effects taking the drug. Some mild nausea, in the beginning. I've followed through with regular HIV testing, as well as kidney tests.

I've participated a great deal online in discussions involving PrEP, pushing back agains the "slut shamers" and conspiracy theorists who think its a bad idea.

I had no problems getting this covered by my insurance, and my out of pocket cost is nothing, because of the Gilead co-payment assistance program. I changed insurance providers in January (to United Healthcare), and had to order the drug through their specialty pharmacy. But this has been fairly easy, and it is always sent within 2 business days. It did require pre-authorization from my doctor and a little bit of red tape with the pharmacy to set this up.

About a month ago, I was on my first gay cruise. I went home with a couple who told me they were positive, but undetectable. We were all intoxicated. In the middle of it, I was being topped by one partner, when the other one looked down and told us both that he wasn't wearing a condom. We started with one, but it slipped off, and I didn't notice. We were having condom-less sex for about a minute. Maybe it wouldn't have happened if we were all sober. But this is an example of how things can happen (my first ever), and even a person who vows to use condoms 100% of the time could have an experience like this.

This gave me a level of anxiety the next morning, but I felt assured that everything would be OK because I decided to use PrEP. The couple both indicated that they were undetectable, but I never know who I can trust, or what to believe.

Being on PrEP put the control in my hands.


I waited the requisite three weeks and went in for a NAAT test, which came back negative.

I'll never know if being on PrEP prevented me from contracting HIV, but I'll always be grateful that I made the decision to start taking it.


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

Kamis, 16 April 2015

VIDEO - HIV Positive Men: Having a Healthy Sex Life and a Healthy Family



This informative video, from our friends at the Bay Area Perinatal AIDS Center, talks about how HIV+ men, with HIV-negative female partners, can avoid HIV transmission - even if they want to have a baby.

The video includes info on the prevention benefits of treatment as well as PrEP. Click to watch.

Sabtu, 11 April 2015

PrEP Facts Brochure for People and Providers

http://prepfacts.org/assets/PrEP_Facts_16-pager_brochure_mech_FINAL.pdf

Since we know one of the biggest barriers for PrEP access is providers who are resistant to providing a prescription, our friends at San Francisco AIDS Foundation developed a patient-provider brochure to help overcome this potential barrier to both learn more about PrEP and use it as a tool to talk with your medical provider. Print it off, or save it on your phone.

It features details on how PrEP works, what taking PrEP entails, cost and insurance information, checklists, as well as PrEP-related billing codes that will help your provider figure out how to submit your services for payment from insurance companies and Medicaid.

Check out PrEPfacts.org for more great resources.

Here is a direct link to a very helpful virtual library of PrEP materials.

www.prefacts.org


Jumat, 10 April 2015

VIDEO: Truvada: The HIV Prevention Pill No One Is Talking About

Fantastic reporting from Fusion TV, featuring a beautiful couple, one of whom does porn on the weekends.

One of our favorite exchanges is towards the end when the reporter asks a random guy in a bar about Truvada as PrEP. He expresses concern that it would make him more promiscuous - "I do feel that if I took PrEP, I would be prone to be more promiscuous- I do." Mitchell counters with, "But you already are promiscuous, so why don't, why not protect yourself?" To which the guy responds - "That's a very good point."


Rabu, 08 April 2015

Anon in Texas: "Had I known it was going to be so easy..."

Appointment day came, and I was nervous.

I fully expected to have to go in there and plead my case to the judge: "why do you want PrEP?"... "why do you think you're at risk for HIV?"... "why are you having so much sex?"... "why do you have so many sexual partners?"  


by anon

I live in Texas. One of the large cities, but it's still Texas. Definitely not a hotbed for gay acceptance or progressive anything.

When the FDA approved PrEP back in 2012, I paid attention, but was really surprised about not hearing much buzz about it. But I kept paying attention. After a while, I found out that some friends on the west coast were on it, and I kept paying attention.

Finally, after a good talk with them about risks, "should I, shouldn't I," etc., I decided to go for it. And boy was I nervous.


A few months prior, I mentioned the idea to my primary care physician. I've gone to her for years, and she's handled everything I've ever thrown at her wonderfully (when she first saw my PA, she asked me if it hurt). When I mentioned PrEP, I said I wasn't ready to do it yet, but wondered if she'd heard anything about it. She had not, but she looked into it, and said that she could refer me to an infectious disease doctor if and when I decided to go on it. Her rationale was that she doesn't have any experience prescribing Truvada (if any of her patients test positive, she gives them the same referral to the ID doctor).

So once I decided to do it, I emailed her and asked if she had since changed her mind about prescribing it (she hadn't), and again she offered to refer me to an Infectious Disease doctor. She specifically recommended one she knew personally, and spoke highly of her. Before I accepted the referral, I asked if my doctor could contact the other doctor and find out if she had any patients on PrEP. My doctor agreed, and called me a few hours later telling me that the ID does have a few patients on PrEP. So I scheduled an appointment. It would be in a little over a week.

Appointment day came, and I was nervous. I fully expected to have to go in there and plead my case to the judge: "why do you want PrEP?"... "why do you think you're at risk for HIV?"... "why are you having so much sex?"... "why do you have so many sexual partners?" These were the questions that I'd been repeating over and over to myself for the previous week.

And when the doctor finally came in the exam room and spoke to me, she didn't ask me any of them. No sexual practice questions... no slut shaming... nothing.


When she came in the room, she handed me a pamphlet about PrEP. I brought up some other health concerns (which could be exacerbated by a known, but low occurrence, side effect of the Truvada), and she wasn't worried about it at all.

She agreed to the prescription without any hesitation. "It's risk versus benefit" she said. "In high risk individuals, the benefits outweigh the risks."

We chatted a bit more (she said she was impressed with my knowledge of HIV and PrEP) and said once my blood work came back, she'd call my prescription in to the pharmacy. As I left, I thanked her, saying that the visit went so much easier than I imagined it could have.

Later that day I get an email indicating that my blood work is back, everything looks good, and that she sent my prescription. I would have actually had the medication that night, but for some reason, almost every time they send a prescription to my pharmacy, it gets "eaten" by the system. It took a couple more days for her to resend it, but as soon as she did, the pharmacy filled it. I have CIGNA insurance, and my copay for it was only $40, which was brought down to $0 with the Gilead copay assistance program.

My appointment was on a Thursday, and I picked up my Truvada on Monday (it would have been quicker if it wasn't for the weekend and the issue getting the prescription to the pharmacy). 

 Had I known it was going to be so easy, I would have gotten the prescription months ago.

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

Jumat, 03 April 2015

Leveraging ACA and PrEP for My Health

The Affordable Care Act is one new system I leveraged to my benefit (which has saved me over $5K to date as of March 29, 2014), and PrEP is a pretty new system I'm leveraging to my benefit as well.
I use PrEP as a fall-back plan, not as the only method of protection in my life.

by Kevin Plover
Minneapolis, MN

In 2009 through 2013, I was paying between $3K-$8K in out of pocket medical expenses. I had "amazing health insurance" through my employer, but I considered those kind of costs to be a major burden. Truvada cost ~$970 through my insurance - again, I considered that cost to be a major burden.

At the end of 2013, everyone on the news was complaining about ObamaCare, so I figured "I'm going to check this out for myself" so I hoped onto Healthcare.gov and selected my state.

I live in Minnesota, so we actually opted in to the Affordable Care Act (also known as ObamaCare for those that haven't watched the Jimmy Kimmel episode about the subject), so Healthcare.gov forwarded me to our state's marketplace exchange website MNSure.

The process was pretty easy - put in my birth date and zip code and answered a couple other questions, then I was whisked away to a list of tons of insurance plans. If I was going to enroll in an ObamaCare plan, it was going to be to save money (which I didn't think it could at the time), so I selected the platinum level plans.

A quick note: My deductible with my employer plan was ~$300. My maximum out of pocket with my employer plan was about $8K for 2014. Truvada for PrEP cost $970/mo through my employer plan - I'd be hitting that maximum out of pocket without any effort and it would be killing me financially.

So I saw a lot of high deductible plans on the MNSure website - like $3K deductibles before the insurance started paying anything... but the maximum out of pocket was also $3K, so once you hit your deductible, you paid nothing - my employer plan didn't do that - once I hit the $300 deductible with my employer plan, that's when I started paying $970/mo for Truvada for PrEP until I hit $8K.

I looked a bit more and found a plan that had $750 maximum out of pocket with a $750 deductible. And the premiums? $186/mo. My employer plan was $800/mo (I paid $200/mo, employer paid the rest).

It was one of those "this is too good to be true" moments - so I called up the insurance company and asked a lot of questions and gave them a lot of scenarios - it was true - they actually blew my employer plan out of the water.


I didn't "Qualify" for any subsidies or tax credits, because my income is too high, so I didn't register on the MNSure website - I registered on the insurance company's website - less paperwork, cutting out the middle man, etc. In January 2014 I got my prescription of Truvada for PrEP. It didn't cost me $970 like my employer plan would have - it cost me $550 because I had a $200 Gilead Copay Coupon from the GileadCopay.com website. And with that one prescription I met my maximum out of pocket for the entire year on my Affordable Care Act marketplace insurance plan.

I've gone to several doctor visits for various things, filled various prescriptions, and had other medical care since January - and it never gets old when the bill is .00.

PrEP is helping me achieve my health goals - one more layer of protection in my life - but it's also helped me towards my financial goals by reducing my medical costs dramatically thanks to the Affordable Care Act.

Sometimes you just have to leverage new systems to your benefit. The Affordable Care Act is one new system I leveraged to my benefit (which has saved me over $5K to date as of March 29, 2014), and PrEP is a pretty new system I'm leveraging to my benefit as well.

And I'm always asked, "Since you're on PrEP, does that mean you don't wear a condom anymore? Because you know PrEP only protects against HIV - it doesn't protect against all the other sexually transmitted infections"

And I respond "Yes, I am on PrEP which only protects against HIV. And my habits haven't changed - I don't have riskier sex because I'm on PrEP, and I use a condom with the same frequency I always have. Unless you can honestly say you use a condom 100% of the time, no exceptions, then you are at risk for HIV - and even condoms break. I use PrEP as a fall-back plan, not as the only method of protection in my life."

So that's my story - I wanted to add an extra layer of protection in my health maintenance plan, so I got on PrEP. I wanted to save myself money, so I leveraged PrEP to meet my out of pocket maximum on the insurance plan I leveraged through the Affordable Care Act.

No side effects, still testing negative for HIV as well as testing negative for those other sexually transmitted infections.

Still having .00 out of pocket for the rest of the year on all my medical care.

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