The HIV risk factor
How do you sort through all the conflicting information — from the media, the
Internet, prevention experts, and medical professionals — to decide what’s safe
sex, how you know when to get tested, and what the future will look like if you
come up positive?
By Tony Giampetruzzi
The first time I met Troix Bettencourt I was a college student and a volunteer speaker for BAGLY (Boston Area Gay and Lesbian Youth). That was 10 years ago, and, at the time, my only duty was to visit a number of high schools and speak with students aboutÔthe joys and challenges of being gay and young. At 18, Bettencourt, on the other hand, was deeply involved with the organization, and much of what he did was HIV/AIDS-prevention work with gay and lesbian youth.
What I didn’t know then was that Bettencourt was HIV+. “The irony of the story,” says Bettencourt, “is that I was actively involved in BAGLY and part of what I did was HIV prevention. But I didn’t always practice what I preached. So, I felt really ashamed and I didn’t disclose my status for several years. I moved to California for a few years for a fresh start.”
The next time I saw Bettencourt was in 1998, at an AIDS Walk rally in Boston. He was a keynote speaker and appeared to be the poster boy for the growing number of youth who are infected with HIV. He was publicly open about his status, perhaps for the first time, and, as he spoke to the crowd of thousands, he looked as healthy as when I first met him.
I recently spoke to Bettencourt for the third time, and he reports that he is still feeling great — in fact, he realistically sees himself living another 30 or 40 years. But he wasn’t always so positive in his outlook.
You see, after he learned that he was HIV+, Bettencourt says that it took him five years to unlearn all the misinformation and propaganda that had saturated the country regarding HIV and AIDS through the ‘80s, ‘90s, and even today. Now, he’s on a mission to put his new knowledge to good use.
He’s the Title IV Coordinator for JRI Health in Boston and spokesperson for HIV Stops with Me, a prevention campaign geared towards people who are HIV+. And what led me back to Bettencourt was an opinion piece I spotted in another newspaper for which I am a correspondent. He penned the piece, “The Truth About Superinfection,” and in it he denounced the mainstream media and HIV-prevention folks for not telling the whole story about the many aspects of HIV transmission, treatment, and prevention.
“HIV-positive prevention messages that revolve around ‘superinfection,’ ‘reinfection,’ or the never-proven myth that an HIV-positive person can be infected with a drug-resistant strain are dangerous. And, in my opinion, a huge waste of public dollars,” Bettencourt writes. “[The messages are] just like the HIV-prevention messages of yesteryear that preached ‘oral sex with a condom’ because there is ‘some’ risk involved.”
“The people who were having unprotected oral sex and who honestly identified that behavior as their only risk were not and continue to not test positive for HIV antibodies. The backlash in the community at large has been . . . that HIV educators and prevention specialists were out of touch with what is and isn’t risky behavior.”
It’s just like the drug war. As soon as people realize that something — marijuana, LSD, casual oral sex — isn’t the evil menace it has been made out to be, they begin to discount everything they hear on the subject as a whole. That’s dangerous, and that’s what’s hindering HIV prevention efforts.
Too many answers
So, implies Bettencourt, oral sex is okay, and so-called superinfection (when a person is infected with two concurrent strains of the HIV virus) and reinfection (being re-infected by the same viral strain) are overblown or misrepresented by the media. That got me thinking about HIV even more than I had been in recent months.
As I related in part one of this series for the Phoenix last month, I had a dalliance with a man who is HIV+ last March. According to Bettencourt, I shouldn’t have worried. My doctor gave me the same type of assurance after I told him what had occurred.
But, as Bettencourt reveals, prevention specialists, and, indeed, the ones with whom I spoke, err on the side of caution, saying, of course, that there was some risk involved in my late night rendezvous with that guy. So, I thought, who do I believe?
The truth is, I asked just about everyone I know of authority whether or not it’s at all possible that I could have been infected with HIV from the blow job that I gave an HIV+ guy. The result? Medics said probably not. Prevention folks said that it was, of course, possible.
So, the jury was still out and I was frantic when I consulted the all-knowing Internet, where lists and lists of common early HIV symptoms appear and varying degrees of risk accompany certain sexual behaviors on thousands of different Web sites. Now absolutely NOTHING was consistent or uniform.
So, let’s talk hypothetical: Say you meet a really hot guy at one of Portland’s illustrious clubs or bars. After some conversation, a few drinks, maybe a hit or two of something less legal, you go back to his place and proceed to have some really good sex. The next morning, you recall that maybe last night wasn’t altogether safe, and you begin to worry. There have been lots of nights like this, maybe, but this is the first time that you start to consider your risk for HIV.
Maybe you struggle home, turn on the Dell, and Google for “HIV risk factors.” Within minutes, you’re confused because, according to Web site A, you should be safe, while Web site B says that your risk factor is indeed high and that you should wait three months, go to the clinic, and get yourself tested.
For instance, some sites even suggest that kissing someone who is HIV+ poses some risk for infection — of course, just about any doctor or prevention specialist would agree that this is patently untrue, yet, it says so on the ‘Net and, to some, the screen is their bible.
The truth about what is and what is not risky sexual behavior is a bit of a conundrum. Bear in mind, this disease, unlike most others, is a mere 20 years old and still viciously stigmatized. Although many doctors and researchers turn to a number of studies for their statistics, they are quick to point out that study results are often skewed. For instance, the individual who claims to have been infected with HIV through oral sex may have forgotten or been embarrassed by other more risky behavior, generally anal sex or IV drug use.
Still, different camps have different opinions about what is and is not risky and the opinions are often quite variant.
On the side of prevention, specialists typically serve a diverse, often disenfranchised client base and caution marks all their messages. These people have been on the front lines from the very beginning and have witnessed the disease’s prevalence first hand.
“This virus,” says Darrell Lamar, director of prevention at the AIDS Action Committee in Boston, “who knows where it’s going? So we’re gonna err on the side of caution.”
In Maine, where prevention resources are constantly being stripped away, the messages being disseminated still come down to the basics: 1. “safe-sex”; 2. emphasizing the importance of HIV-status disclosure. But officials at the Peabody Center in Portland say they are in the process of evaluating their prevention messages, given a new shortage of resources and the changing ways in which people are eschewing HIV prevention.
“I’ll tell you what we would say to someone in a prevention situation. You’ve heard this before: There’s a continuum of what is risky and what is not risky,” says Doug Bailey, the director of programs at the Peabody House. “We would try to not go further than that. People have to make their own decisions about their behaviors.”
“Wear a condom.” That’s been the message for almost 20 years — and that advice continues to be sage. But it’s outdated and ineffective and there is a growing camp of HIV educators who suggest that archaic prevention messages are becoming worthless.
Risks: oral sex
Let’s talk specifics. What’s risky, and what’s really risky, and what’s actually pretty safe? What are the doctors saying?
Dr. Ken Mayer is the medical research director at the Fenway Community Health Center. You’d be hard-pressed to find anyone as knowledgeable or as current on the many facets of HIV pathology.
He stops short of saying that you can’t be infected through oral sex, but he comes pretty close. “Sometimes medical doctors and researchers are asked for absolution. But we can’t say with 100 percent assurance that someone who sucks on a penis with no ejaculation, that there is absolutely no risk for contracting HIV. The issue is one of those ‘the check is in the mail’ phenomena.
“There are some very well documented cases of infection by exposure to ejaculate . . . but the vast majority of HIV-infected gay men engaged in receptive anal sex,” says Dr. Mayer. “My take is that oral exposure to ejaculation is much less risky [than anal sex] and oral exposure without ejaculation is pretty safe. There are viral particles in pre-cum and, in theory, they could be infectious, but cases are not well documented. I’d say that on the scale of safety, it’s pretty safe.”
Locally, Dr. Robert Smith, the medical director of AIDS consultation services at Maine Medical Center, says only that “most people who have studied infection through oral sex think that there could be some risk. I wouldn’t dismiss it.” As for recent studies, POZ Magazine, a periodical that serves the HIV+ community, reports that a Spanish study in the June 2002 Journal of AIDS suggests that “deep throating is a looooooooow-risk pastime for HIV transmission. For 10 years, 135 negative partners in serodiscordant [meaning: one partner is HIV+, the other one isn’t] couples engaged solely in latexless headbobbing. The outcum: 19,000 unprotected headjobs, not a single seroconversion.” But that’s just one of many studies and, over the years, the outcomes have ranged from no risk to negligible risk to low risk.
The prevention guys say better safe than sorry. “We know that unprotected anal intercourse with someone who is infected, with you as the receptive partner, is the highest risk form. We would say that oral sex, unprotected, is not as risky but not risk-free,” says Peabody’s Bailey.
The ultimate message on oral sex — you be the judge.
Risks: anal sex
I pushed Bailey on some risk factors, noting that I was told that insertive, unprotected anal sex actually represents a small risk. “We’d agree with that,” says Bailey. “But there’s the danger — that’s not a message that we would feel is responsible to put out there because, again, there is a continuum. It’s not as risky, but there have been cases.”
Dr. Mayer says it’s no myth that unprotected receptive anal sex is the gateway to hell when it comes to HIV in the gay community. But, “With unprotected insertive anal sex there is very good evidence that you can contract HIV,” he says. “Look at the global epidemic. Most of the people became HIV positive from female to male transmission, and that transmission is very, very efficient. There’s no reason to believe that it would be any different anally.” He adds that rectal mucosa (the lining of the rectum) contains HIV and that there are small bleeding points in the rectum. In addition, on a study of cadavers, it was found that in the distal urethra (the hole that leads down the penis) an immune profile suggests that urethral mucous membranes are particularly susceptible to viral particles, including those of HIV.
“For receptive partners, there are lots of factors, even if it has only happened once. It’s Russian Roulette, but if it has happened only once, the odds could be in your favor.”
If you’re anything like me and concerned with your health, my immediate advice is stay the hell away from the Internet and get yourself a good doctor who knows something about the health issues that concern you. Sure, the media, the Web sites, and prevention officials all seem to get it sorta right. At the same time, however, there is a huge schism between the information coming from medicine and that coming from prevention, and the prevention model, maybe rightfully so, seems to be drinking from a glass that is half empty.
See where we’re going here? Could be they’re scaring you silly for a reason.
Do you have it?
So, you’re in front of the computer and your questions still aren’t answered. Well, why not look for some symptoms. If HIV is really all that bad, there ought to be some initial symptoms, right? Again — the Internet information is about as predictable as the disease itself.
According to former US Surgeon General C. Everett Koop’s Web site, symptoms usually present between one and three weeks following exposure to HIV and they may include fever, throat infection, swollen lymph glands, headache, joint or muscle pain, fatigue, loss of appetite, weight loss, nausea and vomiting, diarrhea, a rash, or skin ulcers. The site also points out that some people don’t have any symptoms at all.
There’s the catch. If you’re worried about HIV/AIDS, chances are your stress level is up and that might cause headaches and fatigue. Gosh, you might not even feel like eating ‘cause you have a little belly-ache and so you drop a couple pounds. You see where I’m going with this — I’ve just accounted for at least five symptoms on the list and all of them can be attributed to something other than HIV.
Or how about this list of symptoms from the National Library of Medicine (sounds official, huh?): mouth disorders including hairy leukoplakia of tongue, oral thrush (a yeast infection of the mouth), and gingivitis; prolonged diarrhea; skin disorders; dermatophyte infection (fungal infection of the skin or nails); swollen lymph glands; excessive sweating; bacterial pneumonia; prolonged fever; prolonged fatigue; malaise (vague feeling of discomfort); weight loss; joint pain; peripheral neuropathy . . . the list goes on. And the number of similar lists grows daily.
Here’s the rub — most people do present with some symptoms during the first month of exposure, but they are so general that they often go ignored, especially if you’re not looking for them.
Any and every doctor will tell you not to self-diagnose — the list of symptoms associated with HIV are similar to the list of symptoms for hundreds of other ailments. According to Dr. Smith the “majority of individuals, when they are first infected (within about 3 weeks) present with a flu- or mono-like illness and it is variable — fever, aches, rash.”
And Dr. Mayer adds: “The majority of people have symptoms, but there are people who are completely asymptomatic and that is a relatively small number. So, it’s very important for providers to educate what the symptoms might be. In general, flu-like.”
So, unless you’ve been engaging in really risky sex, that flu is probably just that, the flu. If you have had risky sex, any doctor or prevention official would tell you to get tested.
Okay, so you’re not getting any conclusive answers about what’s risky and what’s not, but it’s okay if you do have HIV, right? Aren’t there drugs to treat it?
What about the wonder drugs?
When protease inhibitors were introduced in 1996, they were hailed as the answer to keeping people with HIV and AIDS alive and well — and, indeed, they have done their job well. While they were a boon to the infected, however, they spelled disaster for prevention providers. George Friou, the executive director of the Peabody Center, concedes that the protease inhibitors, which prevent the HIV virus from replicating once it enters a cell, have prolonged thousands of lives indefinitely. At the same time, their introduction caused a PR nightmare when many people were led to believe that HIV had instantly become a chronic, manageable disease.
“Take diabetes, and I’m not making the analogy to HIV. Even if you say diabetes is a chronic, manageable disease — it is chronic and it is manageable — it still shortens lives and it makes lives miserable while you have it. HIV can be managed — and managed a whole lot better than it was six or seven years ago — but it’s no fun, and the drug regimens are extremely difficult to deal with,” says Friou. “You may not be infected with a virus strain that is manageable — you could be infected with a mutated virus that can’t be managed with the drugs that are out there today. I don’t think it’s a safe bet to say that it’s a chronic manageable disease. I also think that after five or six years experience with the cocktails, that no one can say that they are going to be effective 10 years out. How can they possibly know?”
And, in the past two years, the media has been relentless in its reporting that HIV has developed resistance to the drug cocktails or HAART (highly active antiretroviral therapy) of which protease inhibitors are a component. Are these drugs really becoming less effective? Is it just arbitrary resistance, or are there extenuating circumstances that lead to resistance? In other words, if you get HIV tomorrow, and you’re healthy, and you don’t do drugs, and you take your meds when you’re supposed to, and you don’t have a bizarrely aberrant form of the virus, is the outlook good?
Doctors say “most of the time.” They say that there are strains of HIV that are resistant to some drugs, but generally not all the drugs. They do warn, however, that more and more individuals are being infected by the resistant strains.
So, where is all this dire “resistance” chatter originating? First, there are the people for whom the drugs, regardless of the reason, either don’t work or are entirely intolerable. The latter is becoming increasingly rare as more and more anti-HIV drugs become available.
Bettencourt, the realist, says point blank: “Resistance happens when people are not consistent in taking their medications.” He points to recreational drug use, apathy in adhering to drug regimens, and, at times, a complete protest of the disease itself as reasons that people don’t adhere to what is otherwise a very strict regimen.
Dr. Smith takes it a bit further: “There seem to be two groups of people where resistance becomes a problem. The first is the group of people who were on mono- or duo-regimens for the first years that the protease inhibitors were available. It wasn’t enough, and doctors didn’t know it, so people had already developed resistance before they could be put on a third drug.”
“The second group,” says Dr. Smith, “are those who don’t take the drugs on a regular basis, and that really has to be more than 90 percent of the time.”
Dr. Smith’s comments are qualified by an article (“The Problem with Protease”) in the September 2002 issue of POZ, which states that “protease inhibitors were hyper-marketed and over-prescribed to tens of thousands of healthy patients who . . . went on to develop vexing side effects and viral resistance. These patients exhausted future drug options long before they truly needed them.” In fact, a University of British Columbia study reports that 50 percent of people put on the promising regimen of anti-HIV drugs in 1996 didn’t need them — their viral loads and CD4 counts didn’t warrant therapy.
Still, the problem of resistance shouldn’t be totally ignored — and there are plenty of other prohibitions to relying on protease inhibitors. First, they have very toxic side effects, the extent of which are still unknown. They are expensive (one year of therapy will run you in the neighborhood of $30,000) and federal and state funding for drug-assistance programs continues to dry-up. This is all fact.
So it’s clear: When it comes to treatment, prevention officials are faced with a daunting task — if they focus on individuals for whom HAART is effective, they run the risk of sending the message that AIDS is curable. But if they focus on those who are dying, they not only offend the many HIV+ people who are doing well, but they are also labeled as alarmists in light of the deluge of information released daily regarding treatment options.
“The sad thing is that people are still dying, but the focus has shifted to those people who are responding well to the medications. We get calls all the time it seems, saying the meds are working, and they’re doing really well, but they don’t work for everyone,” says Lemar.
Michael Duffy, AIDS Action executive director, adds that “those of us doing prevention have to look at the flip side and we have to hold onto our credibility. If people only see and hear about the people who are doing well, and that’s what the media has portrayed, then they won’t believe our messages and us. Or they dismiss us out of hand and say ‘you guys are alarmists.’ ”
The truth is, in the US, treatment seems to be fairly promising. The medical community has even developed new programs for those on HAART aimed at keeping drug toxicity levels under control. Structured Treatment Interruptions (STI’s) might help control or reverse some of the long-term side effects caused by anti-HIV therapy. The idea is to take an occasional “drug holiday” which is timed to prevent the HIV from replicating wildly while helping a person’s system better handle the drugs.
According to Bettencourt, we still don’t know if Structured Treatment Interruptions are effective for people who have a detectable viral load, however. “For patients who have tried and failed several anti-HIV treatment regimens — especially those with low T-cell counts — STIs may be dangerous! Through the implementation of STIs, viral resistance has been shown to correct itself in some cases.”
In the end, if you ask anyone in the prevention or medical field, they will unanimously say that the most important thing that you can do to avoid future hell is get tested now. Most people in the know are actually throwing 20, 30, even 40 around as the number of years that people could live when diagnosed with HIV today — and that’s without taking a possible vaccine into consideration. “I don’t think that’s an exaggeration. We’re only six years since the three-drug therapy was introduced and we don’t really know what the long-term benefits will be, but it’s true that for people who can get full suppression, they could live for a very long time,” says Dr. Smith. “And there are enough new treatments out there so that if there is a viral breakthrough [in the body] that there can be replacement drugs and salvage therapies.”
And Dr. Mayer says, drugs or no drugs, there are many other things to be considered when test results come back. “First, people have to find out and orient themselves to something that they can live with for many, many years. At the onset, I think that the least important thing is the drugs. The most important thing is orienting yourself to the disease. Learning how to manage it, going through a grieving process, dealing with anger,” says Dr. Mayer. “Finding out where you’ll get your support and promoting things like health and nutrition because we don’t have a way to cure it or a way to eradicate it.”
There are also many new drugs in the pipeline, including a very exciting drug, T-20, or what has been dubbed an “entry inhibitor,” which promises to work against the HIV virus before it even has the chance to enter the body’s cells and begin multiplying. Just this week, the proteins were discovered that have kept a small group of HIV+ people healthy for as many as 20 years without ever needing drugs. And then there is the elusive vaccine — all are topics for a future article.
For now, most people simply beg vigilance, as there is no cure in sight and Bettencourt, indeed many educators, say that new prevention efforts must be geared towards those who are HIV+, especially those who don’t know it. “I really focus on living with the disease . . . not surviving. All the other stuff is just part of maintenance,” says Bettencourt. “We really have to reach the people who are HIV+ because after they are diagnosed, it’s not like all of a sudden they aren’t high risk. The ball gets dropped.”
“The truth is, you’ve gotta have HIV to spread it. If I’m not in the equation, you’re not gonna get it. And, if I am in the equation, you need to know it and we both need to be safe.” n
Tony Giampetruzzi can be reached at firstname.lastname@example.org. Look for part three of his series on AIDS in Maine, which will explore the realities of living with the disease, in the issue of November 1.