I'm an HIV Physician. And I'm Starting PrEP.
July 11, 2014
Howard Grossman, M.D., is the director of AlphaBetterCare, an LGBT-friendly primary care provider serving New York City and New Jersey. An HIV physician and researcher for more than 20 years, Grossman is also a senior attending physician at Mount Sinai Roosevelt Hospital.
I am a doctor who specializes in LGBT health and HIV medicine. I have spent the last 30 years working to help my patients who have HIV live with the illness and trying to help those who are HIV negative stay that way. I am also a 60-year-old gay man who has spent those same three decades trying to keep myself from becoming infected with HIV. I am tired of being scared, so I am starting on PrEP (pre-exposure prophylaxis). I hope that by sharing my story I may help others make decisions about protecting their own health.
Five days before my 60th birthday in April, I was at my doctor's for a routine visit and review of my labs. He walked in and said, "There is something strange about your labs -- you are testing positive for HIV." My Western blot and ELISA tests were both positive. Anyone who's heard those words knows how I felt right then. He then added, "But your HIV viral load is undetectable." It made no sense. If I was positive, it had to be a relatively recent infection as I'd tested negative only a few months before and I should have had a high viral load, not none. We could only figure that it had to be an error. I returned to my office and, over the next two days, ran every test I could think of to look for HIV. And then I waited. Finally, everything came back negative. Needless to say, I was relieved, but it was a bittersweet birthday to say the least.
What I was ashamed to tell my doctor, and what I did not tell anyone else for weeks, was that when I heard the results all I could think of was that I had had unprotected sex. For 30 years I had faithfully used condoms for intercourse and they worked for me. I don't have a lot of sex anymore these days, a fate I know I share with most single gay man of my age. In January, however, I'd started dating someone. When we finally had sex, I couldn't maintain an erection with a condom. Too much wine, pain from recent surgery, being 60 -- who knows what caused it? But I was pissed off. And embarrassed. So I pulled off the condom and entered my partner. It lasted less than 2 minutes. My partner was HIV positive but had been undetectable for years. I knew my risk was minimal if any, but when I heard the positive test results, all I could think was that those 2 minutes were going to undo everything I had done for three decades.
Of course I'd deal with being HIV positive if it happened. I knew that I'd be all right on medications. But how was I going to talk about it? How could I publicly admit that I'd done something like this? I was embarrassed, ashamed and frightened -- all emotions I'd spent years trying to talk my patients past when they seroconverted.
That's when I started to really think differently about PrEP. I'd prescribed it for a number of patients in the previous year, but I was not pushing it hard except for those who were refusing to use condoms at all and those who were constantly going on PEP (post-exposure prophylaxis) after risky sex. After my experience, I began to seriously wonder just how many others were in the same boat as me, afraid to talk to me no matter how nonjudgmental I was in the exam room because of their own shame?
I swore to myself I would redouble my commitment to using condoms for intercourse and if I couldn't get it up, I'd just do without. Anything not to go through again what I had gone through before my birthday.
But then it happened again. Several weeks ago, I found myself in bed with someone who I really, really liked. Again, he was HIV positive and undetectable. Everything was going great until I tried to put on a condom. I lost it again. And again, I was embarrassed, angry and really wanted to have sex with my partner. So I entered him without a condom.
Afterward, I was not sorry that I did it, but I did decide to go on PEP. It was the first time I'd ever done that. I'd never been at risk from a sexual or occupational exposure in all these years.
Twice it had happened and I was scared. I could promise myself all I wanted to that I would be safe, and that I really, really meant it this time, but I realized that I couldn't guarantee that I wouldn't do it again. So I've decided to go on PrEP. I'm a 60-year-old single gay man. After all I've seen, I cannot get the shadow of the epidemic out of my head when I'm having sex. I don't have the luxury of having a steady partner. I can't predict when I'll have sex again. If there is something out there that can reduce my risk of getting HIV by 95%, I will use it. I'm tired of being scared of HIV.
I recently had a conversation about all of this with a good friend who has been an HIV provider for a long time and is working on multiple prevention initiatives. PrEP seems to be opening the door for a host of new possibilities when we discuss stopping new HIV infections. If the risk from a positive person who is on medications and undetectable is decreased by 97% and the risk to an HIV-negative person on PrEP is decreased by 95%, do condoms add anything to risk reduction?
Personally, I will continue to use condoms. I want to decrease my risk of getting HIV and also of getting STIs (sexually transmitted infections). Far too few places are testing for STIs in the anal and oral areas and far too many of my patients are getting infections there and not in the urethra. PrEP will not protect against these infections, but condoms will.
I hope that my example will help others and perhaps, in some small way, what I'm doing can serve as a tribute to Dr. Charles Farthing, who died recently at far too young an age and who famously offered himself as a subject for an early and controversial HIV vaccine. Let it also honor all those patients and friends who have been putting their bodies on the line to end this epidemic for the last 30 years.
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Comment by: Nicholas
Wed., Aug. 19, 2015 at 4:01 pm EDT
I live in Australia currently, i'm 26 years old and am what could be considered "high risk". I'm on a working visa in the country and dont have access to the Australian PBS. Recently i visited a ASO in Brisbane and the recommended that as a foreigner I order generics online. I got a fact sheet from http://hivfoundation.org.au/ and in it they recommended a site http://www.aids-drugs-online.com/
This site only sells generic Truvada....from India?? Is this reliable/reputable? They're assuring me that it is, and to monitor health with a physician. Have you had any experience with overseas generics?
Comment by: Mark
(Las Vegas, NV)
Sun., Aug. 24, 2014 at 6:57 am EDT
I am 43 and have had HIV for about 21 years and have been in a committed relationship for 8 years with the same partner. My partner is 51 and HIV negative. Neither of likes using condoms while having sex with each other and haven't used one in about 7 years. He tests regularly for HIV. I always douche before anal sex repeatedly until the water is clear. We always use an oil based lubricant called Stroke 29. I am very sensitive to fragrance and latex (I hate to say it because it's so un-PC not to use condoms and people who say there sensitive to latex are just lying about it just to get out of wearing a condom but I am not lying I really am and I bleed every time one is used on me and it always hurts even when used with the "doctor" recommended water based lubricant. Non-latex condoms are expensive and hard to find). Even though the risk for HIV transmission is low when virus is undetectable it apparently is possible to still transmit HIV. I never heard of anal mucus before and that it could contain HIV. I have urged my partner to consider taking PrEP, but he said he wasn't concerned. After reading this I am going to ask him to read this article and reconsider because I don't want anyone else to suffer from HIV like I did during the 23 years of being infected. Fortunately, I got my health back in recent years.
Comment by: A friend
Sun., Jul. 27, 2014 at 6:31 am EDT
As a straight, HIV negative patient of Dr.Grossman this article embodies how he provides medical care to his patients, with passion and compassion. Not once have I ever felt uncomfortable talking with him about family planning, a cyst on mynback or STI testing. He always shared his life stories and it made my experience better. I wish more physicians were like him. I applaud you Dr. Grossman for not only writing the article but allowing us to see even doctors have vulnerable moments!!!
Comment by: Worried young
Sat., Jul. 26, 2014 at 3:23 pm EDT
For almost a month, iv been reading stuffs like this including self research about hiv. Respect to you sir. Can anyone advise me regarding my prob? Had sex with a lady i dont know. I entered her for 50sec and wore a condom after and ejaculated. Twas january 18 and i got negative result on feb 17 of the same year. The test was a finger prick blah blah i dont know. Im worried. :( please help me.
Comment by: Mike Willis
Tue., Jul. 22, 2014 at 4:24 pm EDT
Thanks for telling the poignant truth sir.
Comment by: Justin
Mon., Jul. 21, 2014 at 1:06 pm EDT
I really liked your article and connected with it on so many points.. I also don't always pratice condomed sex and am always the "TOP" but I realize there still is a risk.. I've been thinking more and more about PREP but I'd have to get insurance to cover it.. (I'm currently uninsured) .. Thanks for the article and the honesty.
Comment by: Anonymous
Mon., Jul. 21, 2014 at 10:33 am EDT
Thank you for being vulnerable and sharing your story. It takes a lot of courage.
I am very concerned with medicating our community's problems away; risk compensation with PrEP use; and the cost of this drug and its affect on national, state, and private health plans. That being said,
Low-risk, privileged, not 13-24, and white. I don't think you're the best PrEP candidate.
Comment by: TonyDewitt
Sun., Jul. 20, 2014 at 11:52 pm EDT
This article transcends the doctor/patient relationship by showing that doctors are human beings also, vulnerable to the same desires that their patients are. I commend Doctor Grossman for his candor, not only about his own sexuality, but also about his temptations.
Comment by: Michael W. Tucker
Fri., Jul. 18, 2014 at 4:57 am EDT
It take courage to tell your experiences and realize that age along with other fears seem to make sex a past tense experience but desire is always there and there will always be someone attracted to you and deciding how to handle each situation is difficult as humans are all impulsive especially when lonely and desiring to have a more perfect life.
Comment by: Rusty Sherwood
Fri., Jul. 18, 2014 at 12:30 am EDT
I've been HIV for 22 years and cleared the HEP C. And I think it is a wonderful idea if people can afford the price of these drugs which I know will not be covered by Hobby Lobby. I've been no viral load for 10 year with the new and better tolerated meds, and if I should have consensual sex with someone I would prefer them to take the anti virals,not that it would protect me from prosecution if someone became infected by someone else or the system failed which is highly unlikely. Your doing a good thing anyway you look at it even though it doesn't effect us who have lived 2 decades with this plague from hell.
Comment by: paulm63
Thu., Jul. 17, 2014 at 9:11 pm EDT
It amazes me to think you were worried about something that my partners and I have done without worry for many years. I have been HIV positive since 1987, detectable viral load, only recently on meds. I bottomed exclusively for my first two partners 12yrs and 6yrs, never using a condom. Neither is now HIV positive. My current relationship is a mix of Topping and bottoming, still no condoms, but my cock is one of the dryest you'd likely encounter, and i never cum inside anyone. After 8yrs, my partner is still negative. He drips far more, and i did manage to pick up his genital herpes (play, you pay). I guess my point is that, as a Top, you are unlikely to be at risk, even with HIV infected male partners. Enjoy your sex with them.
Comment by: RogerL
Thu., Jul. 17, 2014 at 8:38 pm EDT
Dear Howard, I know the feeling all to well but I went from full blown AIDS in 2007 haveing been infected since the very late 90s to now undetectable thanks to a great Medical team. I have had no sex since 2007 and had absoluletly no interest until I was told I was undetectable. Being in middle age, having sex is a problem at times and I hate condoms as I cannot hold an erection with one so then there is the option of unsafe sex with a fellow HIV+ (undetectable or low levl HIV) or using a thin high quality condom with viagra or eqvivelent. Using viagra with a condom works for me but I find it hard to ejactulate with a condom so its not 100% perfect. Having sex without a condom (let's admit most would prefer that. So any profilax or prevention that enables us HIV+'s to have sex with each other without any further risk to each other would help considerably.
Comment by: Enid Vazquez
Thu., Jul. 17, 2014 at 5:22 pm EDT
I am awed by the courage it took to write such an intimate story. There are a thousand or million such stories, and we need to hear them to bring clarity to the "just use a condom" madness. I learned Day One in my HIV work: Sex is complicated. That's why we have an epidemic, and that's why we need to use whatever works.
Comment by: Horrified patient
(thanfully not CA)
Thu., Jul. 17, 2014 at 2:13 am EDT
HIV sucks, but it's hardly something that warrants the sort of panic and shame this man has trotted out. Many of us are doing quite well with HIV. We have a right to resent that we're the subject of so many anxieties. Is HIV "no big deal"? No one would say that, but I think it's fair that it should be viewed as one of many serious health issues, not a nuclear catastrophe. Few physicians would proudly talk about their panic as they await the results of a blood sugar test. Few psychologists would tell them that's normal. The fear you comfortably describe alludes to the exceptionalism of this virus. My heart goes out to your patients who must realize that when you're looking at them, you're seeing death.
HIV prevention has always had a dark underbelly of HIV stigma. To some extent, that's unavoidable with the prevention of any disease. In this case, you and a few others are a little too comfortable wallowing in that stigma. I can't imagine this being acceptable with any other disease. Please do not use fear and anxiety about us as a vehicle to sell this drug. Please do not promote your own prevention on our backs. We deserve better than this.
Comment by: Richard Loftus, M.D.
(Palm Springs, CA)
Tue., Jul. 15, 2014 at 8:48 pm EDT
Howard, thank you for a very thoughtful and brave essay on this topic. Even though PREP has been around, in theory, for a few years (since the iPrex study showed it could work), it's only in the past 3 months that I have patients asking for it nearly every week.
My biggest worry is that people will assume PREP means "no more condoms." Condoms protect at least partly against at least 10 infections I can think of, including HIV--and probably ones we don't even know about. PREP protects against two (HIV and probably HBV, although no one is studying the latter). In 1998, when some HIV+ gay men in SF stopped use of condoms because they "had nothing to lose," we wound up with one hell of a syphilis epidemic, with some men winding up with permanent brain damage from neurosyphilis. Chlamydia and gonorrhea rates escalated, and I started seeing sexually transmitted HCV several times per year. I worry that the arrival of PREP will be presage the arrival of STD surges among gay men. And even those who are doing "the right thing" will be affected by higher odds of acquiring an STD, because it's the net total behavior in the population that affects their individual risk. I saw this in SF in 2004 when I worked at Magnet, the DPH satellite office in the Castro.
PREP is also expensive. When Viagra came out in 1998, insurance plans covered it, for awhile. (Now, not so much.) PREP retails for $13,816 per year (AIDS Treatment News, 4/27/12). Three lubricated Lifestyle condoms per day for a year is $547.50 on drugstore.com. That makes PREP 25 times the cost of (heavy use of) condoms, with much narrower protection. Some of my patients have struggled with over $100 co-pays just for as-needed PEP meds for a month; who will be able to afford PREP if insurance plans stop covering it? More cost effective designs for PREP, as are being studied in the ADAPT study, are needed.
The arrival of PREP promises help against HIV. I just hope it doesn't worsen other health issues of gay men.
Comment by: dick keiser
(ft lauderdale, fl)
Tue., Jul. 15, 2014 at 2:04 pm EDT
First of all, a refreshingly honest column from an MD about PrEP and peace of mind. Second, I don't understand his statement:"Personally I will continue to use condoms" when twice he said he cannot maintain an erection WITH condoms? typo?
My personal experience is from talking with guys on PrEP they are on it because they are at 100% risk from not using condoms and are not about to use PrEP + condoms.
Replies to this comment:
Comment by: Jim
Thu., Jul. 17, 2014 at 4:07 pm EDT
I agree...how can you say you will continue to use condoms wehen the last two times you started using one, you discarded it and entered your partner without one? AND...that is the reason you started PrEP?
Comment by: Higher Road
Tue., Jul. 15, 2014 at 9:46 am EDT
Wow -this guy HAS access to condoms. NO long tern research on how this drug will impact healthy bodies... Last time we used drugs in a wide scale prophylactic manner we created super-bugs - now antibiotics can not touch some killer bacteria. We know HIV mutates like crazy, so here we go trying to create a super bug HIV strain? What does this physician say the next generation who may well die from HIV because of his unwillingness to have safe sex? The only certain winner here is the pharmaceutical companies who sold this billion dollar profit idea into our community, and who will sit back, reap profits and sell us more drugs when Truvada possibly destroys our bodies.
Replies to this comment:
Comment by: Richard Loftus, M.D.
Sun., Jul. 20, 2014 at 6:41 pm EDT
Please don't villainize someone who bravely acknowledged a reality in gay men's complex sex lives. If the answer to HIV was as simple as "duh, condoms," the epidemic would already be almost over. In the data that came out yesterday at the Australia meeting, HIV transmission rates are down for all US risks groups EXCEPT young gay men and gay men over 45. Even with my worries about PREP I see it could change that.
Gilead did NOT develop Truvada for prevention and did not initiate this usage-- PREP is the work of AIDS prevention activists who insisted academic doctors like my former coworker Bob Grant, author of the iPrex study, study it when 25 years of vaccine research failed to give us a working vaccine. It is easy to point fingers and express rage but like most human crises, AIDS is more complicated than that.
Comment by: Kip
(Los Angeles, CA )
Sun., Jul. 13, 2014 at 11:46 am EDT
This is a good article, an actual account of real life situation which is faced by many men. Dr. Grossman this took a lot to do on your part and you are to be commended for your public position. I applaud you!
Comment by: anonymous
Sat., Jul. 12, 2014 at 5:20 pm EDT
as a clinical psychologist, i want to commend you for writing this article. as someone who works with many gay men, some of who have struggled with hiv or fear of infection, i have felt ashamed of unprotected sex i have had in my own life. your article felt incredibly validating and also intelligent. thank you so much for writing it.
Comment by: Josep M Llibre
Sat., Jul. 12, 2014 at 4:22 pm EDT
Really impressive post!.
I can simply congratulate you for being able to report your very personal experience, for your honest feelings, for being so brave, just thinking it might provide help to others. Never seen this before!.
For sure this will contribute to open the eyes of many patients, providers and payers to PrEP, one of the areas where science and practice do not coincide yet.
Comment by: Paul
Sat., Jul. 12, 2014 at 3:16 pm EDT
Your honesty is much appreciated. Another aspect of hIV fatigue. These issues must be brought to the front and discussed.
Comment by: Mark Aurigemma
Sat., Jul. 12, 2014 at 1:45 pm EDT
A beautiful, brave and wonderful piece. Let's hope that PrEP, in addition to being an excellent HIV prevention tool, can also inspire many more honest conversations about sex, love, self-care and caring for others.
Comment by: Michael Kerr
(New York, NY)
Sat., Jul. 12, 2014 at 8:58 am EDT
I raise my glass to you my fine sir! Thank you for your insight and honesty.
Comment by: Tony R
Fri., Jul. 11, 2014 at 11:06 pm EDT
One of the bravest & most honest articles about HIV & safe sex I've read recently. Bravo!
Comment by: Shannon Weber
(San Francisco, CA)
Fri., Jul. 11, 2014 at 5:55 pm EDT
Dr. Grossman: Thank you a thousand for sharing your story. You are brave and kind in your truth telling. Wishing you every happiness.
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