The Case for PrEP, or How I Learned to Stop Worrying and Love HIV-Positive Guys

Taking Truvada changed my life. No, really.

Comments

1
Great story, Evan. IE: your life. Thanks for sharing, and it's a pleasure seeing so much thought put into such a frenzied topic. Your humor helps drive the points--and the facts--across. Glad you're being mindful and staying safe, while leading the charge.
2
Taxpayer money being spent to subsidize irresponsible behavior.





"free" drugs...lol.



3
This is FANTASTIC. It's been so weird waiting for my favorite paper to really write about this. Waiting and waiting. And you, Evan, have knocked it out of the park! Thanks.
4
Can you please comment on any known side effects to kidneys? Thank you.
5
Evan's piece rocks.

Recently, I've fairly stupefied by some of my friends' reactions to talking about PrEP with their doctors. Hopefully Evan's story will get them to think about whether it's right for them in ways I couldn't.
6
So I like the story but what does "my partner did things I did not consent to" mean? rape?
7
You say that a neighbor has been on truvada for 20 years. Not possible. One of the component drugs did not exist in any form 20 years ago.
8
I got interrupted while commenting. To continue...



I fully support the use of PREP and PEP, eliminating this epidemic requires many tools and this is a very valuable one. I think AHF has lost its collective mind over this issue.



Just one caution about side effects: I have worked in hiv research for most of the last quarter century, and am also a long-term survivor myself having been diagnosed with AIDS in 1993. So, I know a bit about the subject. The side-effects listings that you read about for Truvada or any other drug are based on limited information. There is not a lot of data on long-term dosing, and what is available is mostly open label dosing following a controlled trial. Long-term side-effects are often discovered years after a drug is approved. So, when you take a drug daily for years you are a human guinea pig. These two particular drugs seem to be two of the safest existing hiv medications and most users have no problems taking them, but any time you take medication there is risk.



Thanks for sharing your story.
9
Ok... I'm a fan of anything to curb the epidemic. But I have to question the following. I also happen to work in clinical research, HIV in fact... so there is a great deal being overstated, and lots being understated, in the above. Let's look at facts...









1. Even though we may not all perform as well in them, what about the condoms? Maybe I missed reading this study... but what data is there that has concluded taking Truvada daily ALONE (no condoms, guys) is effective? Visit Truvada's website for PrEP: http://start.truvada.com/individual. All you see in bold letters are things saying "TRUVADA is used with safer sex practices at all times..." and "taking TRUVADA may not keep you from getting HIV-1. You must continue using condoms while you are taking TRUVADA." Ok, you say, so the manufacturer has to do its CYA. But... look at the findings of the large trials that get Truvada approved as PrEP by the FDA. "The iPrEx study was a randomized, double-blind, placebo-controlled, multinational clinical trial that included 2499 HIV-seronegative men or transgender women who have sex with men. Subjects were randomly assigned to receive TRUVADA (n=1251), or placebo (n=1248) once daily. Subjects received monthly HIV-1 testing, counseling, condoms, and management of other sexually transmitted infections. The primary outcome measure was incidence of documented seroconversion. The efficacy across all study subjects was as follows:




HIV RISK REDUCTION




42% risk reduction in HIV-1 acquisition vs placebo




Emergent HIV-1 seroconversion was observed in 131 subjects (48 in the TRUVADA group vs 83 in the placebo group).




In a post hoc case control study of plasma and intracellular drug levels in about 10% of subjects, risk reduction appeared to be the greatest in subjects with detectable intracellular tenofovir. Efficacy was therefore strongly correlated with adherence.




Because of the intensive risk reduction counseling provided as part of the trial, self-reported risk behavior among the subjects in this clinical trial declined overall during the trial, both in terms of decreases in the number of sexual partners and increases in condom use.




In November 2010, the multinational iPrEx study showed that a once-daily pill containing tenofovir plus emtricitabine was safe and provided an average of 44 percent additional protection against HIV infection among men who have sex with men (MSM) who were also provided with a comprehensive package of prevention services. These services included provision of




condoms, monthly HIV testing, counseling to reduce risk behavior and encourage adherence to the daily pill regimen, and management of other sexually transmitted infections" http://start.truvada.com/hcp/iprex-study









So.... the participants were given Truvada to take daily, condoms to use of all times, and one on one regular, lengthy (I believe an hour?) safe-sex cognitive behavioral therapy. You will not find this in the real world, trust me, I know clinical trials all too well. Safe sex counseling will be tucked into the 15 minutes with your physician alloted by your insurance, and your physician likely isn't a skilled therapist. When addicts leave rehab, they've undergone so much support - counseling, scare tactics, group and individual meetings, lectures - I've never heard of a one saying, "I'm going right back on drugs." You hear the opposite. And it has a last effect. For a while though only. Because in the real world, you don't have this structured environment, you don't receive this kind of motivational therapy about sex and it's repercussion, and exploring why you want to screw raw. You read articles like this and think that taking Truvada daily will mean you wno't get HIV if you bareback. That's not what any study has concluded at all. It sure would be nice if it did... and somebody please prove me wrong and I'll feel better.









2. Myth: Truvada won't lead to increased risky, unsafe sex. LIE. Anecdotedly, I don't have a single friend on PrEP that is not ONLY barebacking. Not a one. The ones to first jump on the wagon were the barebackers. The advocate recently dedicated "30 Days to PrEP" and I read soooo many of the articles... and only once did I see a guy quoted as saying he still uses condoms, it gives him extra peace of mind, yeah, yeah. The rest -- how GREAT it is to bearback w/o fear. Guys are using PrEP INSTEAD of, not in conjunction with, condoms in herds. Just read the advocate. Yes, the studies show the drug makes HIV transmission less likely than condoms alone. But nowhere... nowhere are they stating what's come to be the modern belief. Michael Weinstein is a douche, saying that due to low adherence, PreP shouldn't be embraced in the public health arena. That's like saying that Crestor and Metformin shouldn't be embraced in fighting lipid problems and diabetes... because people are too dumb to be adherent. Let people decide, and if the F up, it's on them. But unfrotunately, he's right when he says that we'll see an increase in risky sex, decrease in condoms w/ PrEP, and an increase in other STD's. I'm seeing it. The bigger picture will be told in time. But get ready PrEPster's for a large increase in anal cancer... which is rather rather deadly. It's caused by HPV. And HPV's high grade anal cancer causing strains are in abundence with barebackers unfrotunately. So don't say I didn't warn you. HPV also causes warts in certain strains -- extremely, nasty, painful, and often requiring many many surgical procedures to fully remove... and then they come back 30% of the time. Not to mention every other STD out there, and some becoming resistant...









3. Truvada was FDA approved 8/2004. Your neighbor is lying if he tells you he's been on it for 20 years.









4. It's all safe and good, not a new drug at all. NOT! HIV drugs have been fast tracked from the start -- it was a death sentence, and resistance is problematic, so many HIV drugs are fast tracked beyond the realms of other meidcines. Truvada's side effects, taken long-term, are not known. But so far... we know chronic use leads to renal (kidney) impairment and bone loss (Gilead has a new version of Tenofovir, currently seeking FDA approval in STRIBILD which strongly reduces these per clinical trials... no word on if they'll seek approval for PrEP, at which point all the studies will have to be redone using the newer agent). I don't know of either drug being particularly liver-taxing either. Truvada is used to TREAT Hepatitis B -- so if you STOP taking it, it can cause a Hep B flare, and then you have liver damage. But taking Truvada isn't really a huge liver killer. It's a kidney and bone killer.









5. The "PrEP as needed" study in France may show to be effective -- but THAT is a walking nightmare. Half of MSM don't even get HIV tested annually. Few fully understand that that negative test today only means you were HIV negative 4-6 weeks ago (the 3 month mark is a lie people). Only one in 6 MSM uses condoms regularly. So... this was a controlled clinical trial, in the real world people aren't gonna go pay $150 for a viral load check to ensure they haven't become acute infected before just popping their friend's pill. It will lead to false security and more infections. It will lead to resistance. Bad, bad idea. Well, good idea in concept - but not applicable with how the world runs today.









Like I said, what's found out in controlled clinical trials is never what it becomes in the real world. It can be close. But it's almost always... actually WORSE in the real world. But we all should realize that. So bravo to PrEP... just make sure you read all the information, data and the instructions. And make sure you know a bit about other STD's, particularly HPV, if you are planning on barebacking. HIV isn't a death sentence like it was; but anal cancer has a five year survival rate of like < 25%... and it's cause is: HPV. How does this HPV cause anal CA? By barebacking.
11
Truvada's only been in the market since 2004. There's no way your neighbour's been on it for 20 years. Don't make shit up.
12
Nothing made up, dear readers. If my neighbor was inaccurate, which it appears he was, then his self-reported inaccuracy slipped quite unfortunately through the fact-checking process, likely due to the late addition of the quote to the article. Apologies.
13
Thanks for all of the supportive comments. This remains a divisive and controversial issue. I stick by everything I reported; everyone I interviewed discussed doing his own research before choosing to get on the drug, and not one person reported failing to take the drug every day. I am completely in support of PrEP. I think Roger Klorese said it best, that the arguments against it are absurd when we think about how many dead friends would've taken this drug in a moment during the height of the AIDS crisit.
14
"The Case for PrEP, or How I Learned to Stop Worrying and Love HIV-Positive Guys" -->Well, there's your problem. No one should become complacent and "stop worrying" about HIV, whether you have a miracle pill or not.
15
"Naysayers have claimed that the daily dose is an unreliable expectation because they know people and we won't take it every day.



FTFY.



Most doctors could tell you about all people finishing regiments, taking pills irregularly and other issues. It's not just gay men.
16
Also, when did single returns turn into double spacing in The Stranger's comments? It used to be double return = one line of blank space. Even in my preview, this shows up as a single space between paragraphs.

Ick.
18
Fantastic article, Evan! Thank you (:
19
I have no respect for an article about HIV prevention that can't get basic facts right. Your neighbor could not have been on Truvada for 20 years; Tenofovir was approved by the FDA in 2001 and Emtricitabine was approved in 2003. They were approved together in 2006. So your neighbor could have been "taking truvada" for a maximum of 11 years and probably only 8. The unknown health effects of Truvada are a major reason to not take it, and brushing this concern away with a lie is really irresponsible.
20
I have no respect for a piece about HIV prevention that can't get basic facts right. Your neighbor could not have been on Truvada for 20 years; Tenofovir was approved by the FDA in 2001 and Emtricitabine was approved in 2003. They were approved together in 2006. So your neighbor could have been "taking truvada" for a maximum of 11 years and probably only 8. The unknown health effects of Truvada are a major reason to not take it, and brushing this concern away with a lie is really irresponsible.
21
I love gay folks and David Sedaris is my all-time favorite author, but would you all hate me if I said I was concerned about people reading this article and assuming they dont need condoms? Homosexuality has existed for 1000s of years and aids didn't show up until 40 yrs ago, so how do we know another disease won't arrive later? Why would anybody think that getting feces inside their penis won't lead to another disease? After millions of innocent monkeys died for this and billions spent on compassion, enlightenment, facts over myths, progressive understanding,

Acceptance of the fact homosexuality is a naturally occurring thing, love, understanding, hope and finally this wonderful medication, a decent gay pperson would respond with "gimme my pill so I can fuck strangers"? Anyone fucking without a rubber is a danger to society.
22
Thank you for writing this. PrEP is a drug whose time has come. I went to a community meeting about it at the Rainbow Center in Tacoma just last night.

There will be 500 or more new HIV infections in Washington this year. With 7 million residents that may not seem like a lot, but unfortunately 75% of new infections are in the MSM population. Out of some 200,000 MSM in Washington as many as 375 may contract HIV this year. (Napkin calculations all.)

PrEP is expensive, but it's use while you are sexually active and particularly if you are in a relationship with an HIV+ partner could save you from a lifetime of taking more expensive drugs with more serious side effects.

It is also allowing HIV- women to get pregnant while married to an HIV+ partner which is something of a miracle for those couples.
23
As to condoms it is of course worth noting that PrEP does nothing to stem the transmission of Syphilis, Chlamydia, Gonorrhea, Herpes, or HPV. Many of these infections are transmitted by asymptomatic carriers. Your partner can give you the disease before s/he even knows they have it. Condoms help with most of them, but only if used for both anal and oral sex. PrEP does not do away with the need for frequent STD testing for non-monogamous sexually active people.
24
And how about the skyrocketing rates of other STDs among gay men? Take your Truvada, but don't forget about drug-resistant gonorrhea.


27
Although the consequences of HIV infection have decreased dramatically over my lifetime, from leperotic death sentence to (apparently) someone whom you can fuck but must still manage their disease (sic) the rest of their life; they still aren't low enough for me.
28
Great read, I hope this encourages people to test regularaly and often followed by ball slapping sex.

What happens at higher than zero viral loads (you know, when someone lies? )The studies have pushed secondary barriers with a known ō load, how's it handle unmediated full blown?
29
"There is such an odd backlash against guys on PrEP... People are calling it the 'whore pill.'"



Gosh, after reading this account of your own behavior I can't imagine why
30
My biggest concern as a woman to tends toward bi men and is also allergic to condoms (latex and polyurethane), would be increased transmition of other STDs with decreased general condom use. I've managed to be 100% std-free without condoms because I don't fuck strangers, I get tested regularly and my partners use them with their other partners.




The ¡aids panic! drilled into the heads of us 80's kids seems to have somewhat worked. Almost everyone I know in my age range, gay or straight, uses condoms regularly.




Anyways, thank you Evan for this article. This discussion needs to be happening between all sexually active adults.
32
I was diagnosed with Hiv 11-07-14, four days at the age of 22. I am still in the hospital because of the sickness that was cause due to this nightmare. My CD4 counts are 274 and with 200 being the beginning the aids threshold, I'm terrified. My my recent ex boyfriend nearly 3 years tested negative thirty minutes after I told him. He has been here with me when he is not working sleeping in the bed beside me. Reading your article has given me most hope for so many people and myself if I am to get better with treatment. Thank you. It is a miracle to say the very least, and I needed this to have to look forward in hope. -Morgan
33
@2 - You mean like meds people take for their diabetes?
34
@28 "What happens at higher than zero viral loads..."



Evan's piece seems to draw from two different lines of inquiry.



Studies of PrEP's effectiveness evaluate risk without regard for the sexual partner's HIV viral load. What happens at higher viral loads is presumably "baked into" the results.



The studies of couples with differing HIV status excluded couples where the poz partner had viral loads >=200 copies per ml of blood. These studies also excluded couples if the neg partner used PrEP (or the "morning after" variation of the protocol).



If a poz partner's treatment failed (as happens), the risk of transmitting the virus would presumably increase. No one has studied (that I'm aware of) how infectious an HIV+ man is in the "tweener" stage between successful therapy and no management of HIV at all. Studying that scenario would be very difficult. This scenario also suggests a substantial risk of transmitting a virus that is resistant to one/more drugs.



But, the data on PrEP's effectiveness isn't contingent on a particular level viral suppression.
35
As an older gay man in a committed relationship for most of the last quarter century (that means any time longer than 12.5 years, everyone other than #8 -- nice try at inflating your time), I can't help but feel this comes dangerously close to encouraging risky sexual contact. This is NOT a free pass to suck every cock you can. The best way to avoid HIV is to get into a committed relationship and STAY IN IT. I love you guys, but why does everything have to come down to more sex with more strangers?
36
@2 free drugs ? What are you a pharmaceutical company ? Can't wait til patent comes off pricey HIV meds and it's coming very soon, once that happens generic drugs will be available and then our screwed up government will bust out with the cure;) I'm so sick of shallow people always having something negative to say about others happiness. I take truvada and I'm not a dirty disgusting sick whore;) and pharmasudical company's give out free drugs daily to all types of conditions they also bribe doctors to push pills by sending hot men and women to their offices with low cut shirts and free lunches. You know y ? Because they rip off sick people. Personally I don't care about testing done on monkeys if it's to save the human race. I mean you could always go down and ask your pals if you can participate in a clinical trial and spare a few monkeys .
37
I can relate to your article and appreciate how life changing new HIV drugs have changed many lives for the better. It is critical that policy leaders continue to promote a marketplace that supports innovation in medicine so that patients and our healthcare system can realize the tremendous benefits of modern medicines.
38
I'm pretty baffled that the author of this article, Evan J. Peterson, claims to have the personal breadth and experience to write about PrEP when he admits to never having unprotected sex, yet still experiences the level of dreadfulness that goes along with getting a standard STI test. Personally, I would've rather heard the voice of a gay man who got drunk at R Place and ended up having sex with a poz-undetectable male in the moment, because that certainly does happen. If the name of the game is immunization, then let's here from someone who actively or occasionally sleeps with men with HIV and the real life results of Truvada.
39
For me, there's a lot I don't understand. Arguably the worst part of having hiv is taking daily medication, aside from the social aspects of it. Psychologically, what is the difference of taking hiv medicine when you actually have hiv, and taking hiv medicine when you don't have it? If you by chance get it, you have already been desensitized to the reality of hiv. I have been pressured into prep because my partner is positive, and I simply don't get it. I don't think it's fair for bloated pharmaceutical companies to recoup losses by making people have anxiety about sex that may have been done safer with more appropriate information. Nor do I think it's okay that people can get government assistance for such an overpriced drug that is not essential for survival. Birth control is different because an individual could realistically afford it even without insurance. I'm never going to "slut shame" people who use Truvada. I just find it facetious that people have this preconception that they will forever take an annoying pill, that doesn't even make you feel good, every day, but "MIGHT forget" to use a condom the 4 or 5 times a month they would actually need it. Your article was well written and your story is close to my life, but it writes ever so closely to any other person going through the motions of finding out they have hiv. I refuse to pay even my $20 copay for these poisonous pills just to be in a relationship with someone. The idea fills me with such guilt knowing that people all around the world actually need it for survival and not just convenience from our first world problems.
43
Keep using condoms. PreP only protects against HIV. It gives ZERO protection against other STIs.

HIV didn't exist when we thought everything was curable in the 70s. Sexual Ecology is a real thing. Google it! The next HIV-like Sexually Transmitted Infection is out there waiting for the right conditions to get a foothold in the human population. I, personally, would hate to see us devastated by another AIDS-like Holocaust.

If you think the religious right is bad now just wait and see how they act if another killer STI gets a foothold in the gay male population.

Know your history Gay Men or be doomed to repeat it.
45
thank you so much for sharing your journey on prep, i am a 56 yr old gay male and all my adult life have had to deal with the possibility of contacting hiv and the hurt both mental and physically this has had on me ,feeling terrible after sex wondering if something went wrong and having to get tested has been the biggest heartache in my life ,sex while great has been a burden to me ,therefore i have now took the first steps to getting generic truvada as we cant get the real thing in Australia but we can legally import generic .getting this oppertunity has totally changed my frame of mind i feel like a kid waiting for xmas
46
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47
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48
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