I feel as though I am working “with them” and not “for them”. We have the same common goal in mind, the hope that someday HIV will just be a memory.
Scott Wilfong describes his experience in rectal microbicide studies at Johns Hopkins
an IRMA exclusive
[IRMA Steering Committee Member Ed Fuchs and IRMA member Dr. Craig Hendrix ran the studies Scott describes in his piece. Read Ed and Craig's bios on the IRMA website here.]
Let me begin by saying, if you are looking for a really good conversation topic, especially on a first date, get yourself involved in the rectal microbicide studies at Johns Hopkins.
It is a quick and easy way to gage one’s comfort level in talking about anal sex and more importantly, research development that may, in fact, save the lives of others someday in the future.
What’s not to be excited about!?
If only I had a snapshot photo of everyone’s first expression upon telling them the in’s and out’s (no pun intended) of my experience with rectal microbicide research. Some people laugh immediately, some cringe, some have a shocked look, and others stare at me with total disbelief, inquiring about actual proof to something that seems so out of the box for them. For many, it is the first time they have ever heard the word microbicide, let alone microbicide research. Believe me my knowledge is somewhat limited when specifically talking about the medical component of this particular research. So, I try to explain it the best I can with a lean towards the importance of this type of research, the extraordinary doctors that are the so passionate about this research, and the extremely important benefits of microbicide development for the lives of many people in the future.
In 1999, after graduating with a degree in Sociology and the first Gay and Lesbian studies minor in my home state of MD, I was well on my way to bigger and better things. I was working in a local coffee shop, contemplating the meaning of life and wondering what options lie ahead on the job front. I was approached by a friend of mine and offered a job as a Field Supervisor for a research study being conducted by Johns Hopkins School of Public Health, entitled, The Young Men’s Survey. Of course, I knew the basics of HIV prevention and how HIV had affected the global community and particularly, the gay community, but I did not know anything about counseling or research.
I was informed that part of the job entailed learning how to do a blood draw. Yikes! I ran the other direction. Getting my blood drawn had always caused me much stress and, in fact, a few fainting spells as a young child. To my shock and to those that knew me, I decided to take the job and thus throw myself into the world of HIV prevention and research. Needless to say, the more I learned, the more blown away I was. For a year or so, we went to the streets and gay clubs of Baltimore City every Thurs, Fri, and Sat in search of those that were willing to participate. This was perhaps, the biggest learning experience to date, as it opened my eyes to the serious issue of HIV in my community. Though this job was extremely rewarding, it often posed ethical dilemmas for us as we lived, played, and worked in these same settings. Also watching community members you know test positive and not return for their results. With my hands tied to a confidentiality contract, I had to sit back and watch many people we tested continue their lives without the knowledge of their status.
I often felt like I was watching the disease spread right before my eyes.
By 2001, our contract with the CDC ended and I was offered a position as Program Director for a small, Baltimore based non-profit, AIDS Action Baltimore. Thus, I jumped on the opportunity. This time I was away from HIV research and could now focus on prevention. In the three years I was with AIDS Action Baltimore, I was able to learn much from the gay community and what specific HIV prevention methods were working and those that weren’t. It was at this time that I attended the International AIDS Conference in Barcelona, Spain. Saying that this conference was an “eye-opener” would be a huge understatement. I was painfully aware of the little gay bubble I was living in Baltimore’s HIV prevention community, and although extremely important, I realized the magnitude of how HIV was affecting the global community.
It was at this conference that I first heard of rectal microbicides and this possibility that someday we would actually have one developed that would kill HIV and other STD’s as well. Upon my return to Baltimore, I began to get disheartened by the choices that many in my community were making. It became clear to me that condom use wasn’t always the norm and that something else was needed if we were going to stop the spread of HIV. In fact, our lives as gay men had become infiltrated with safer sex messages which touted simple truths, kitchy slogans, and the idea that just wearing a condom would be the answer. What I realized was that gay men were, in fact, sick of the old messages, tired of being handed condoms upon leaving their community hangouts, and frankly, burnt out on being told what and what not to do before, during, and after sex. What was once an act of love had become potentially harmful, what was once clean had become dirty, and what should be an act without barriers had become a prison for many.
We all know sex is hardly as simple as asking someone their HIV status or asking someone to wear a condom, lubricant, dental dams, flavored, colored, ribbed, etc. What would a world be like where we didn’t have to wear condoms? Where the act of sex between adults could be just that? Where women in third-world countries wouldn’t have to spare their safety and their lives at the whims of their husbands that refused to wear condoms? Is it possible that someday we may never have to wear condoms again? Thus began my need to know more about what was being done globally. What exactly were microbicides? What would it mean to me? What would it mean to my community?
Will microbicide development save the lives of gay men, women, and anyone (yes, this includes all of my heterosexual friends) that engages in anal sex?
It was at this time, that my friend, the same one who had offered me my first job at Johns Hopkins, came to me with a proposal. He told me about two doctors at Hopkins that were looking a bit further than just researching a new microbicide. I was told that there had never been research like this done in the past as the topic of anal sex was too taboo to even mention, much less, get funding to study where lubricant and body fluids actually go once in someone’s ass.
To be honest, I almost couldn’t believe it? I was floored by the lack of knowledge that the medical community had regarding anal sex! My friend told me about the possibility of a research study through the CDC, in which participants would have a “faux” microbicide injected into their anus, followed by sex with a dildo! What!? Yes, believe me, I was stunned, excited, and wanted to hear more! Really, could this be true? Did the medical community finally wise up to the fact that not only gay men, but many “straight” folks had anal sex too!?
My friend assured me that yes, in fact, this study was legit and that the two doctors who were hoping to do this research were both heterosexual and had been pushing for research funding for a few years now. They were ready to take things to the next level and so I was asked to find a few friends that would be interested in attending a focus group to get more information regarding the study and to help the doctors understand more about gay sex, including different sexual positions, length of sexual acts, sizes of penises, sizes of dildos, kinds of lubricant and who was using what? when? why? and how?
The wanted to know everything!
I was able to get a few of my close friends who jumped on board immediately, to attend this information gathering session. Needless to say, we spent the better part of the meeting laughing! What seemed so uncomfortable to talk about with complete strangers was suddenly out on the table for us all to see. It was absolutely amazing and quite refreshing to watch two adult, heterosexual doctors, ask us questions that are, often times, only discussed in the bedroom, including handling different sized dildos.
For the first study we were told that the CDC would not fund a study that used an actual dildo, as they believed it would certainly be “too much fun”! The CDC required us to use a vaginal dilator, roughly the length of a standard six inch dildo but with no veins, penis “head”, or balls. So, yet again Johns Hopkins was eager to push the boundaries even further by funding their version of the study with the dildo, simultaneously with the CDC study using the vaginal dilator. This way they would know if the actual shape of the penis would change the movement of the lubricant.
We reflected upon all the possible scenarios that could occur during the study, including the possibility of becoming aroused during the procedure.
LOL! That possibility seems quite amusing in retrospect!
Note: This study IS NOT intended to sexually AROUSE, STIMULATE, OR REPLACE actual sex with a partner! LOL! Regardless, we were all on board! None of us knew what we were getting ourselves into really? We all knew that it was something spectacular and that we wanted to be a part of something that would potentially save many people’s lives. So began the rectal microbicide studies at Johns Hopkins. Within the next year we would find ourselves face-to-face with the doctors we only sort of knew, a pair of stirrups, a lubed dildo, a timer, and extremely large medical equipment that were getting a view of something for the first time!!!!!
I think the first time I was admitted to the hospital I was a bit nervous, to say the least. I sort of knew what to expect but as I had never done something like this before, I had nothing to compare it to. Yes, I had a dildo in my ass before but obviously under much different circumstances. The first few protocols involved fasting prior to admission and the use of enemas. Having someone give you an enema in the middle of the night after waking from a deep sleep was just the start of it. This was one of many things that would make most people want to reconsider their involvement in the study. I’m not even sure how well I slept those first few times at Hopkins? Knowing that I would have to “perform”, I mean, “participate” so early in the morning didn’t lend to a good night’s sleep.
I was awoken by a nurse at 7am, after having been given an enema mid-sleep. The first few protocols were grueling as we had to lie on a little mattress looking pad. Once in place, the Study Coordinator would use a vacuum like device used to suck all the air out of the mattress s it would mold exactly to our body and hold us in place. Seemingly ok at first, later turned into a test of our patience as participants, as we had to stay in the same position for many hours without moving. The only time we were allowed to move was to turn over a bit and pee in a jug. Yet, this was just another thing that would send most people running. I’m sure my friends that participated would agree that this little pad was almost unbearable as my back would almost spasm due to being in the same position. Little did I know that lying down would cause so much pain after many extended hours.
After the air was sucked out of the little blue pad and I was set in place, we were ready to go. I was wheeled down many long hospital hallways to a room in the basement of Johns Hopkins Hospital. I always wondered, as I stared at the tiles in the ceiling, if the doctors and patients I was passing had even the slightest idea of what was about to take place? After getting hoisted from one hospital bed to something more stationary, I noticed the stirrups for the first time. Why would I need those I asked? Who has sex with their feet in stirrups I wondered? Well, to my shock, they indeed, were for me! I believe it was at this point that I realized the clinical aspect of this entire research study. Even though I knew much about the study from participating in the original focus group, it was becoming clearer to me that I was in a medical study and everything we did was in writing somewhere, with big money behind it.
Every action and every second was accounted for.
After getting in position on the bed, feet in stirrups, and on my back, I had to keep reminding myself that this was for the greater good. Even while in position and ready to go, I was still shocked by the mere fact that this was actually a funded study. I kept thinking to myself that these doctors are so “cutting edge” and that even I was somewhat still perplexed by what was happening.
As I watched the doctor lube the dildo, I noticed him uncomfortably handle it, as if it was the first time he had held a dildo, covering it oh so carefully with the gel.
My first thought was a bit of fear as I realized that there would be no foreplay, no pre lube in my anus, and obviously no finger to loosen me up a bit. I took a deep breath as the doctor handed me the dildo. Keep in mind that the lubricant or “faux” microbicide had been injected with a small amount of radioactive substances for use with imaging scans, thus we both had to wear gloves that were later placed in a bag to test for amount of lubricant left on them during the procedure. The goal was to use imaging to map out exactly where the lubricant would go in my anal cavity, specifically how far into my body. Remember, this is had never been done before, so everything we did was somewhat “trial and error”.
After handing me the lubricated dildo, I was instructed to wait until the 2 doctors and study coordinator went behind the door at which point they would tell me when to insert the dildo into my ass. This was probably the most difficult part and somewhat nerve wracking knowing that they were just standing feet away from me on the other side of the door and in later studies just a curtain. Pressure was on. I had to insert he dildo in my ass with barely the amount of lubricant it would normally take to have a “pain-free” insertion. I had to take a deep breath and basically just shove the dildo into my ass.
If only they could see the expression on my face. I tried to be as quiet as possible.
The doctors provided a metronome which ticked back and forth. No, this was not like the piano lessons I used to take as a child, although I was immediately reminded of them. For each tic-toc back and forth I had to insert the dildo in and out of my butt with the beat of the metronome until 5 minutes were completed.
Then the doctors came back in the room and we dropped the dildo, our gloves, and any other radioactive materials into a bag for later examination. Yes, all of this would be devastating to most folks, even to many of my gay friends. I really had to keep reminding myself of the ultimate goal.
There I was naked, cold, wet from lube, asshole hurting, with three people I barely knew.
I have to admit that all of my previous training in HIV counseling etc. had paid off. I am not the fearful type when discussing sex and usually make things into a comic scenario to deal with any uncomfortable feelings, often times how many of us have dealt with situations that are not so pleasant. It was this first moment that I began a friendship with the doctors and other staff involved with the study. I had to keep things “light” and fun in order to deal with the actual weirdness of the entire procedure.
Upon finishing the procedure, I was wheeled around for most of the day, sometimes in and out of sleep, as I often had to stay still for hours at a time strapped in an MRI or other scanning device to get the results they needed. I figured out by the 3rd or 4th admission to the hospital that staying up as late as possible the night before was to my benefit as I could sleep through many of the procedures following my sexual intercourse with the dildo. MRI machines are extremely loud and trying to stay still in them for an hour, sometimes a couple of times a day were less than pleasurable.
So, I often drifted off into another world with visions of “dildos and doctors” dancing in my head.
As the months and years went by, many specific protocol requirements changed and evolved. We no longer had to use the little pad that hurt our back, although we still had to stay in the same position. Endoscopies were added to the procedure a few years into the studies and were used to get specifics from the lining of my anal cavity as to the permeability of the microbicide gel. I was the first patient to consent to this procedure. The first time we did an endoscopy, I was surrounded by at least a dozen people in a very small room. Everyone on the medical team seemed fascinated with the work these doctors were doing. They had even presented some of their findings at conferences and by this time, word had spread about what exactly they were doing with us and what they were looking for.
Unfortunately, as I was the first to do this endoscopy procedure for the study, there was no sedation written into the protocol. As I uncomfortably rolled on my side and allowed the scope to go in my ass, I watched the entire thing on the monitor. Oh, what a view! I quickly realized that they were going much too far inside me for my comfort level and literally thought I was going to jump off the bed out of sincere pain and fear. I could actually feel the instrument poking from my inside out about half way up my torso.
Following this procedure, I explained to the doctors that I would not participate in that specific procedure again if they didn’t use sedation next time. I also told them that I would inform the other participants not to follow through with the study until the protocol was changed. That was not something I would ever want to do again or wish on someone else. In that moment laying n the table and ready to run with endoscopy tool hanging out my ass I realized that this was a research study and that, although I had become somewhat close to the doctors, I was still their guinea pig. I use that term lightly as I know that these doctors would never want me to consider myself a guinea pig. Nor would they want me to think that they didn’t have my best interest in mind. So, they willingly agreed to change the protocol and the many tests that followed involved light sedation which made the entire experience much more bearable.
Two other major aspects of the study changed over time as well. The doctors decided to move to the next level and insert another separate substance to my anus that would simulate semen. Thus, they would be able to see where exactly the “faux” microbicide gel would go and then upon inserting another substance, would see how far that particular substance went also. This way they would know what the barrier is for protection.
Would the gel go as far as they wanted?
Would it actually cover all areas?
Would the “faux” semen remain in that area or would it go beyond the “safe zone”, defeating the purpose of the protective microbicide?
So began what I call the second phase of the study. The doctors carefully rigged small “vein-like” tubes through the center of the dildo that would act as a pathway for the “faux” sperm. After my 5 minute dildo insertion was complete, I would call one of the doctors back in the room. I had to leave the dildo in my ass while the doctor used a syringe to shoot “faux” semen through the tubes, thus replicating or simulating a real ejaculation.
By this time I was rather comfortable with the doctors and my embarrassment level was certainly decreased from my previous experiences. The second, and for many, the most shocking twist in the study, involved actually collecting semen from myself three times. The doctors came to me and asked me if I’d be willing to have my own semen shot through the syringe into my ass, thus replicating a more precise rendition of what really occurs in anal intercourse. Of course what did I have to lose at this point? I agreed to do the procedure and so we moved forward. I will admit, many times I would smile during the procedure, laughing at the concept of having sex with myself. Of course, I share my study story with those I think would be interested and, in fact, most are, but this aspect was a bit too much for some and many expressed shock that I would follow through with the later part of the procedure.
Why stop there I thought?! Where is the line to be drawn? Is there a line?
Personally, I can’t imagine that there is a line. I believe this is just the beginning of the rectal microbicide studies. I also truly believe that until we get actual consenting couples to participate in real anal intercourse, then we don’t have the clearest picture of the workings of the anus and how lubricants, semen, and sexual anal intercourse all combine.
It’s interesting to look back over the last six years and see where we started. What began as passionate interest for these doctors at Hopkins has blossomed into some amazing research findings that have been shared at microbicide conferences around the world, including Cape Town, London, New Delhi as well as, many other small conferences. I do want to also note that we do get paid as participants. Unfortunately, this ends up being roughly a little more than five dollars an hour if you were to break down the actual hours spent at the hospital, including sleeping. So, I will assure you that none of us have done these procedures with the money as the main incentive.
Most of us that have participated firmly believe in the incredible work these doctors are doing. I can speak for myself in saying that every time I enter the hospital to admit myself to the study, I think about the future of sexual health.
I think about all of the people before me that have been infected and that have died from the disease of HIV and I imagine a world in which we can get back to the most natural feelings of skin to skin sex without the worries of having to wear a condom.
I am in constant awe of these doctors that push the envelope with medical research and have an eye towards our future. I consider myself to be friends with these doctors and I am aware of the genuine gratitude they have towards us as research participants.
I feel as though I am working “with them” and not “for them”. We have the same common goal in mind, the hope that someday HIV will just be a memory.
Putting my ass on the line is definitely worth it!