Joel - "I was still scared, but something funny happened..."

Here I am taking PrEP on a daily basis. I will admit I have become more open to sex without condoms. My fears still linger and I am trying to work through them.

I have been diagnosed with STIs. When I was using condoms consistently that was never the case.

But I am HIV free.

via Joel Alcaraz

Seattle, WA
Twitter: @joelalcaraz92

It’s been one year since I have started taking the FDA approved pill called Truvada for HIV prevention. The only sanctioned medicine (aka PrEP or pre-exposure prophylaxis) that prevents HIV infection, Not even condoms are approved by the FDA to prevent HIV.

Thoughts so far?

I have not been infected or diagnosed with HIV. I take cyclical STI exams with my doctor. Because of my paranoia I go every month and a half.

When I started to accept that I liked men at 16, I also acquired a deep sense of fear over HIV. Any sexual interaction was meet with condom inspections after intercourse. I was “safe” 100% of the time. Condom usage if done correctly is between 70-97% effective in preventing infection. Those numbers constantly created anxiety. I’d be anxious about the previous night’s blow job and run to my local HIV testing center when class was over.

Men who were HIV positive, I’d shun and turn away. My fear was so deep I could barely kiss them without thinking about the terrorist virus within their bodies.

I was scared of them. I didn’t want to become them, but my thoughts haunted me, chanting “not positive yet.”

Into my Junior year, a guy I dated cheated on me. Usually I have condom-less sex with men I trusted, recently tested, and who I thought I might have a future with. He admitted one night he had been sleeping bareback with his ex while we were dating. I freaked out, locked myself in the bathroom and pictured a soon to be death sentence announced by a drop of blood.

I called the emergency line at my school’s mental help hotline. I was having an anxiety attack locked up in a dorm bathroom. The man on the line managed to calm me down and told me to explain the situation to my doctor the next morning. What had passed had passed.

The next day I told my doctor about the situation and collected samples of my bodily fluids. He also told me about PEP (post-exposure prophylaxis), a course of HIV meds taken for a month after a potential exposure that could prevent me from acquiring HIV if taken within a 72 hour window period after exposure. He gave me the prescription and sent me away. My results came back negative.

The next two years I took PEP three times. Once, with a stranger where there was a condom break. Twice with my ex, my intimacy only seemed to spur paranoia. I am sexually active, my numbers are pretty high. I crave the flesh of another man, but fear is high. I enjoyed sex without condoms, but the thought of HIV always deterred me and sent me into an anxiety driven state.

So I continued educating myself about HIV. Read studies about this new prevention strategy called PrEP. If there was a post-exposure medication, what about pre-exposure? I discussed it with my doctor and he managed to get it approved for me considering the amount of accidents I had reported to him.

The perfect time too, since I had just broken up with my ex, and I knew my behavior would be more promiscuous considering my alcohol induced sexual splurges to help qualm the pain.

For nearly a month I had bowel issues. Not a great start, but it did help quell anxiety. If taken every day there was a very high chance (upwards of 90%) I would not be infected with HIV, and that was if the other person was POZ had a detectable viral load. If they were undetectable the chances were less than one percent. So I dated a man who was HIV positive, undetectable. We had sex, without condoms, and it was terrifying. He assured me I would be okay, he was very well acquainted with the drug and knew members of the community who were experts on the matter.

But it was hard to be intimate with him. I was still scared, but something funny happened.

I began to see him less as a bogey man, and more of a human being. He had HIV, but he was perfectly healthy. Just like me he took one pill a day. Essentially I was living his life, but taking a pill to prevent the virus from attaching itself to me. While he was taking it to keep viral loads levels low. Every morning before work, we would both take the pill and head off.

I still deal with my fear of HIV, but I don’t see it as a death sentence anymore. I’ve become more open to the idea of dating POZ men. From time to time I still cringe at the idea the pill might be a farce, a conspiracy to infect gay men with false hope. People on hookup apps call me a Truvada whore whenever I put I am on PrEP. Oftentimes, they are HIV+ themselves.

There lies the root of the problem, shame. The same people in our community have issues with the morality of the pill. Just as the right has issues with birth control and the HPV vaccine. It will only promote more whoredom they say. Men who said they were not at risk, contracted it, now spout the “condoms only” argument.

Deep down I was ashamed of pleasure. The pleasure of another man, flesh to flesh. Intimacy issues ensnared into bodily behaviors.

Yet, I was still going about my business sleeping around. The fear of HIV lies in the fear of another stigma, a deserved stigma by the larger sect of society on gay men. The zeitgeist being a just punishment for their immoral behavior. It was only a matter of when. I was still ashamed of being gay and liking men. That’s where my fear manifested from, I was ashamed of being gay and feared I deserved to contract HIV and die.

But here I am taking PrEP on a daily basis. I will admit I have become more open to sex without condoms. My fears still linger and I am trying to work through them. I have been diagnosed with STIs. When I was using condoms consistently that was never the case. But I am HIV free. Gonorrhea and Chlamydia are treatable, and you can still get them even if you use condoms for anal sex, oral sex is where they get you!

Hopefully in my lifetime there will be a vaccine for HIV. Until then this is the next best thing, a once a day pill. Even if you use condoms all the time, there will be slip ups, God knows I never planned for one. You fall for someone and trust them and have unprotected sex. Boom, you’re infected that is how my ex who is HIV+ contracted it. Statistically most HIV infections occur from people you know and trust.

Humans are emotional animals, they seek pleasure and sometimes in the heat of the moment we don’t make intelligent decisions. Taking PreP has not only prevented me from getting an infection, but it has humanized those who do have it.

I doubt I would ever have had sex with a POZ man before PrEP. It’s actually safer, considering men who say they are negative oftentimes don’t know their status and their viral levels are dangerously high. While POZ men who know their status and are on treatment can have undetectable levels.

You always roll the dice when you hook up or date someone. If someone infected you one day, and the next week you went to the doctor for a check up it would likely not show up in your results.

So go and get yourself checked, ask about PrEP and see if it’s right for you. Or at the very least have a PEP kit available in case an accident occurs. Protect yourself, its time to be an AIDS free generation. If you have any questions, comments, or concerns regarding PrEP I am happy to answer and regale you with my own perspective.

Cheers. And Happy Pride!

[If you want to connect with Joel, find him on Twitter @joelalcaraz92]

Happy PrEP-Aversary!

Today is the Third Anniversary of the FDA's approval of Truvada for HIV prevention, otherwise known as PrEP.

Happy Birthday!

#yayPrEP!

#PrEPworks!

PrEP involves an HIV-negative person taking a pill every day - called Truvada - to prevent becoming infected with HIV. But PrEP isn't just a pill, it's a program that includes visits with your healthcare provider four times a year, regular HIV and STD screening, ongoing medical monitoring, sexual health counseling and adherence support.

PrEP is revolutionizing safer sex. And you are living in historical, exciting times.

In the past three years, much PrEP progress has been made - more people are aware of PrEP and more people have access to it - in Chicago and across the country. But so much remains to be done. We have to do much better getting PrEP to people who are most vulnerable. We need to dramatically improve awareness and access in the communities where HIV rates remain high - among young gay black men, transgender women, and black cisgender heterosexual women in particular.

We - the collective we - are far from fulfilling the promise and potential of PrEP. And we will only get there -  collectively and collaboratively - through strong, sustained community mobilization, including YOU.

With that said, please share this post and visit us on Facebook - Project RSP - to help get the word out about PrEP. And talk to your friends about PrEP, whether you are taking it yourself or you're a PrEP advocate and ally.

Be sure to check out all the informational links on this blog for everything from fact sheets to financial assistance resources to a Chicago-area PrEP provider listing.



Gay Couple Don't Take "No" for an Answer and Successfully Appeal Insurance Denial for PrEP

[Moral of the Story - Don't Take "No" for an Answer]

by Brandon and Shane
Burlingame, California

My name is Brandon and my husband name is Shane. We are both negative and decided to go on Truvada as PrEP. 

We went to our primary care physician, he talked to us about taking it, side effects, the tests we’d need to take prior to taking Truvada. We did a HIV test as well as a full STD screening, after which he wrote us a prescription for Truvada. We went to the pharmacy (Walgreens) and were told that we would need to get a pre-authorization from our insurance company (Catamaran, our prescription benefit company). I called my primary care physician who filled out the paperwork and sent it back to the insurance company.

 After several weeks we heard back from our insurance company via a letter in the mail stating that we were denied "the Dr prescribing the Truvada must be an HIV specialist” (see below.) We appealed their decision, of course.

In deciding to start Truvada we had done a little bit of online research into taking the drug and we were prepared for the “pre-authorization” but were not prepared to be denied for lack of an “HIV specialist. We had previously used the My PrEP Experience blog as a resource, so we emailed them and Jim Pickett answered and offered us some quick advice including a link to the CDC Prep guideline document to help us with our appeal.

We took that information along with data we found from the FDA ("FDA approves first drug for reducing the risk of sexually acquired HIV infection") and the information pamphlet “PrEP Facts” from the San Francisco AIDS Foundation, as well as Catmaran’s own public list of “approved drugs” which Truvada was one.

The text of our appeal letter to our insurance company is below.

Approximately 2 weeks later we received a call from Catamaran informing us that we had been approved for an initial period of 12 months.

Cheers
Brandon and Shane

Appeal Letter to Catamaran Prescription Benefit  

January 4, 2015
Catamaran
Attn: Catamaran Appeals Department
P.O. Box 371544
Las Vegas, NV 89134 

Dear Catamaran Appeals Department 

I’m writing to lodge an official appeal to the denial of claim #: 0000, a prescription for Truvada Tab 200-300. 

I desire to take Truvada as a PrEP as I am currently an HIV negative actively sexual gay man, and I wish to stay that way. Obviously condoms should be used at every sexual encounter but as a human I make mistakes. PrEP would be there to help when I make that kind of mistake. 

According to the publicly available “2014 Catamaran National Formulary Reference Guide - List of covered drugs” Truvada is listed as a “PREFERRED Antiviral” with no additional proviso of “when it is prescribed by or in consultation with a HIV expert” as stated in the letter of denial. There is no current CDC, FDA, nor US Public Health Service requirement for Truvada as PrEP to be prescribed by an HIV expert, if this is a Catamaran specific policy, I urge you to please reconsider that policy. 

My PCP, Dr XXXX XXXXX, while not a HIV specialist, has been practicing medicine for 24 years. He is a highly respected and qualified Doctor. He has reviewed the recommended REMS program for Truvada as Prep as outlined by the FDA and Gilead with me. (http://www.truvadapreprems.com/#) and the recommended pre-screening HIV and STD tests have been completed with negative results. 

As I am HIV negative and do not have AIDS/HIV+, I am not currently under the care of an “HIV expert” nor should I be. They should be dedicating their resources to their patients that need them. As I’ve referenced below the CDC, the FDA, and the US Public Health Service all state that Truvada as PrEP should be taken by sexually active adults at increased risk to HIV exposure… which I am. 

The FDA approved the use of Truvada as PrEP in July 2012 and stated that “As part of PrEP, HIV-uninfected individuals who are at high risk will take Truvada daily to lower their chances of becoming infected with HIV should they be exposed to the virus.”

In the enclosed CDC document "PREEXPOSURE PROPHYLAXIS FOR THE PREVENTION OF HIV INFECTION IN THE UNITED STATES - 2014” the CDC states “On the basis of these trial results and the FDA approval, the U.S. Public Health Service recommends that clinicians evaluate their male and female patients who are sexually active or who are injecting illicit drugs and consider offering PrEP as one prevention option to those whose sexual or injection behaviors and epidemiologic context place them at substantial risk of acquiring HIV infection.” 

Please give me the opportunity decrease my risk of exposure to HIV, help me do my small part in stopping the spread of HIV/AIDS. Reconsider my desire, my Doctor’s desire, and the FDA and CDC’s recommendation that people like me take Truvada as PrEP and approve my request/Dr prescription for Truvada. 

Sincerely yours,

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!

 

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?

 

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!

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.

 

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.

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.)

 

[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!
 

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.

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

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.

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

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

Click here for Part 1.

“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.

That's What He Said - Part 1

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation.

by Jody Wheeler*
Los Angeles, CA

As the elevator dinged downward, my headache ripped free the sides of my skull, pounded the torn pieces into a fine mist, and set to work violently assaulting the naked nerves.

Things hadn’t gone well.

Not at all.

What had begun as a promising visit to the doctor to begin PrEP, the most revolutionary advance in HIV prevention in decades, had instead become a misadventure into ignorance, idiocy, and irritation. The first two of those belonged to my doctor. The last, as my pounding head attested, me.

Picture for a moment a 40-something white guy, a poster-child for education, a beneficiary of cultural privilege, a fortunate freelancer taking advantage of newly affordable health care (Thanks, Obama!), visiting a doctor for, among other things, PrEP. Picture me. Picture me dashing. I like dashing. Dashing is a good, charismatic word. Picture me stunning if you like. That works to. No complaints.

Anyway. I sat in a brightly lit medical exam room, paper-wrapped table in front of me, ample selection of children’s toys near me (the office had a thriving pediatrics practice) an uncomfortable wire backed chair under me, and a friendly-faced doctor beside me. “Doctor Nameless,” as I shall refer to him, as “Anger Inducing Ignoramus” is too long to repeatedly write of this essay. He’d been typing notes of my visit into his handy medical records terminal.

“Anything else for this visit?” he asked with a smile.

“I’d like to go on PrEP,” I said.

His friendly countenance faded, as dark clouds of concern descended across his brow. “What do you know about PrEP?” he said, the storm building with each word.

I rattled off six months of constant reading: PrEP stood for “Pre Exposure Prophylaxis”, where the drug Truvada is taken daily as a preventative against HIV infection; multiple studies have shown consistent and correct use provides a level of protection against HIV equal to or better than condoms; the side effects of Truvada were generally mild to non-existent in healthy individuals, but still needed to be monitored for safety; that most major insurance carriers now covered the drug; and best of all, from an epidemiological standpoint, Truvada protects against HIV even when people miss a dose.

Hoping for a cookie, Doctor Nameless instead gave me an unexpected response: he said neither he nor any other doctor in his practice would prescribe Truvada for PrEP. He stated Truvada’s protection is uncertain and unproven, it destroys the body, and leads to long term and dangerous health consequences.

“In those studies, scientists don’t even know if it was the Truvada or the condoms that provided the protection people keep quoting,” he said with utter seriousness.

Dafuk? went the 12-year old smart-ass who lives in the back of my head. Did you check to see if he’s actually a doctor and didn’t just borrow a coat from someone golfing —

Yes. Shut up and let me talk, I told that 12-year old smart-ass who lives in the back of my head.

“That’s not what the research shows,” I began. I tried not to sound like a know-it-all. I failed. I always fail in these moment. I do try. Researchers had correlated blood serum levels of Truvada with the preventative effect achieved. It was all about the pills, not the condoms. While I wasn’t an expert on biology, the methodology provided in the journals was powerful stuff. “The research is quite robust,” I finished.

My pushback surprised him. I guess patients usually don’t respond with sentences containing “journal articles”, “blood serum levels”, and “methodology.”

He pivoted the conversation and said Truvada would destroy my kidneys. His words echoed as my mouth had fallen open from utter incredulity, thus providing the perfect acoustic shape between my tounge, throat and teeth for his silliness to bounce and fade, bounce and fade.

Get out. Get out now! Run, dude! Runaway! Again, the 12-year old smart ass who lives in the back of my head.

Know-it-all me engaged Doctor Nameless again. I told him there was little evidence of that in HIV negative people. Some research subjects did have their kidneys work harder, but for most of them, that passed. Very few people in the study had to stop treatment because of a risk of damage. In any event, medical guidelines still mandated monitoring for just that possibility.

Again, not what he was expecting, as our conversation veered into a new, oncoming traffic lane of screeching, beeping, destruction: Sexually Transmitted Infections (STIs). “Truvada doesn’t protect against STIs, so it isn’t safer sex,” he said rather definitively.

The headache I mentioned at the top of this essay? This is the exact moment when it started. I remember distinctly. It walked in, said Hey, I’m here. I’ll be your headache for the next few hours. I’m going to start banging around, driving you nuts. I brought friends. I think we’re ordering pizza, too, and got to work causing my head to hurt.

"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.] 

[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.

Post by Ken Almanza.

Post by Ken Almanza.

Post by Ken Almanza.

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.]

 

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.]

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.]