This is a post about genital herpes (part 1)

I have been MIA the past few weeks because I have been working on a paper for my grad program on genital herpes.  The paper is about the social representation of the disease – how genital herpes is discussed and framed in pop culture and the media, etc.  I have learned a lot writing this paper and I’m excited to share it with you.  Most of what I learned came from my research survey of blogs, film, TV shows, Youtube videos, online forums, images, and health communication theory texts.  But a lot of what I learned was more organic than that.  I learned a lot about the social perception of genital herpes just from the experience of writing a paper about genital herpes.  Let me explain what I mean.

I am a pretty open person and I like to be controversial.  That’s why it was strange to me that when I chose genital herpes as my paper topic, I was a little hesitant to share it with my classmates and the world, aka Facebook.  But being me, I did it anyway.  Dr. Anna Wald, a virologist at the University of Washington, told the New York Times, “ Herpes has a stigma attached to it that even H.I.V. doesn’ t have anymore.”  I think she’s right.  Recently, Mondo Guerra publicly announced his HIV positive status on Project Runway and there was an outpouring of tears, love, and empathy.  This would not be the case for anyone who openly revealed that they had genital herpes on TV.  Can you even imagine anyone doing that?  We assume that one would have to be crazy to share such a shameful, stigmatizing, and personally damaging secret.

I realized that I was uncomfortable associating myself with genital herpes.  Will people think I have it? Why else would someone write a paper about genital herpes and risk that association if they didn’t have it, right?  So I pressed on, putting myself at the center of an itty-bitty social experiment.  I told everyone about my paper on genital herpes.

For two weeks, my gchat and AIM away message read “herpes, herpes, herpes, herpes.”  I received the gamut of responses, from “you have herpes????” to “ewwww” to “I love the fact that you’re comfortable enough to leave herpes as your status message.”  I posted updates about my herpes paper to Facebook all the time.  Most of them got “likes” from classmates and my former sex counseling buddies from college.  In response to a status update noting that just about every Judd Apatow movie includes a herpes joke, a friend joked, “herpes is no joke.”

I wrote the majority of my paper in the Emerson College and Tufts Med School libraries.  I couldn’t help but wonder what someone would think if they checked my browser history to find a plethora of articles, info guides, and support forums about genital herpes.  I also was wary of judging eyes walking past that might catch a glimpse of “genital herpes” on my screen.  I even felt this way in the med school library, where real medical students were making powerpoints with much grosser-looking slides right next to me.  (Abdominal surgery pics? Yuck!)

I’m not exactly new to this feeling.  I spend a lot of time and energy talking and writing about STI prevention, not to mention about rights and respect for people who have STIs. I’m sure plenty of people have already wondered if I do this because I have an STI.  Hell, you’re probably wondering right now.  (Would it make me more credible as a sexual health writer if I did?  Less credible?  Would it change your opinion of me as a person?)

I’ll be completely honest.  When I started writing this post, I paused for a second because I realized that writing this post would forever associate my name with genital herpes in the annals of internet history.  Me and genital herpes, total Google search bffs.  (“Writing about herpes on the internet is like herpes, it will be there for life.”)  But I don’t shy away from things like this.  That’s kindof what I’m about.  Genital herpes is NOT A DIRTY WORD.  But think about it.  Genital herpes is so stigmatized that even a veteran sexual health blogger thought twice about writing about it.

In the next few days I’ll be sharing some more from my paper about genital herpes stigma, metaphors, “herpes humor,” and narratives.  Stay tuned, and take a second to think:  Would you be willing to speak out for genital herpes awareness, or openly support those with genital herpes?  Or would the risk of stigma-by-association be too great?

Read on to part 2 – Genital Herpes: Actually it IS a joke

True Blood Danger: The Health Risks of Vampire Sex

It was only a matter of time.

For the past couple years (thanks to Twilight and it’s R-rated cousin True Blood) the world has been seduced by the notion of vampire sex. After finishing season 3 of True Blood, I remember remarking to a friend, “I wonder if people are actually trying this?” Turns out, they are.

This MSNBC report identifies biting and licking each other’s blood as a new “teen fad.”

Teenagers obsessed with the “Twilight” vampire saga, or those simply fascinated with fangs, reportedly have been biting each other — hard – and then licking or sucking the blood.

It reports some important health risks of this behavior as well:

Such talk alarms medical experts, who warn about the dangers of blood-borne diseases such as hepatitis and HIV, as well as the risk of nasty infections. Typically, 10 to 15 percent of human bites wounds become infected.

“If you break the skin, your mouth is pretty dirty,” said Dr. Thomas Abshire, a pediatric blood and cancer specialist and spokesman for the American Academy of Pediatrics. “The human mouth flora is dirtier than a dog or cat’s.”

It doesn’t surprise me that people are doing this. In True Blood, we see blood sucking as a sexual act – one that heightens intimacy and pleasure. After watching 2 seasons of True Blood back to back, I cannot say it hadn’t occurred to me that this was something people might want to try.  Plenty of people are kinky, and considering the popularity of Twilight and True Blood, biting and blood has become sexualized – even fetishized. I agree that those who have been tempted to experiment with this should be aware of the health risks listed above. It looks like there may need to be a call for education about STI transmission through blood and biting, as well as information on keeping human bite wounds clean.

But much of the MSNBC story annoys me. I highly doubt that teenagers are the only people who have tried, or are doing this. I also doubt that “These are kids who think they are real vampires,” as Dr. Orly Avitzur, the medical advisor to Consumers Union, the agency that publishes Consumer Reports magazine, stated. I agree with a student quoted in the piece who argued that biting is a common practice that has “gotten a bad rap because of this whole vampire thing. In reality… a lot of teens bite – and leave marks – for the thrill of it.” According to his statement, it sounds like biting is common, but licking or drinking blood is not. The MSNBC article suffers from the obvious sensationalism of the story, but does make a necessary point about health risks of biting and licking blood.

So how do we educate adventurous and curious folk about the health risks of playing vampire? Can we find a way to provide non-judgmental education without encouraging the behavior? And who’s responsibility is it to provide this education?

At the base level, we need to remind people that blood is dangerous; even if vampires cannot be infected with HIV or other STIs, (although in an early episode of True Blood, they reveal that vamps are susceptible to Hep D), humans can. Any time another person’s blood gets in your body, you are at risk for STIs like HIV – which, unlike vampires, is a very real threat.

When encouraging personal responsibility is NOT blaming the victim

Nadja Benaissa, a German pop star, is currently on trial for infecting one man with HIV and putting two others at risk. She found out she had HIV in 1999 when she was 16. According to the charges, she had unprotected sex on five occasions between 2000 and 2004 with three men and did not tell them she was infected. One of them now has HIV. Benaissa is a member of the pop group No Angels, and before her arrest the fact that Benaissa was HIV positive was not publicly known. Even though Benaissa admitted that she made a mistake by having unprotected sex without disclosing her HIV status, some folks don’t think she’s the only one at fault.

Carolin Vierneisel, a representative from Deutsche AIDS-Hilfe, a German AIDS service organization, told Time Magazine: “When it comes to consensual sex, whether protected or unprotected, we talk about shared responsibility,” she says. “The criminalisation of HIV transmission, as shown in this case, doesn’t support HIV prevention efforts. On the contrary, it fosters the stigmatisation of HIV positive people.”

Katy Kelleher touches on this in her piece at Jezebel, and asks “Should Benaissa really be responsible when her partner consented to having unprotected sex?” She quotes Gisela Freidrichsen, a German journalist, who wrote: “I always wonder why there are allegations against a woman when a man doesn’t use a condom.”

For those of us familiar with feminism, rape crisis counseling, and Law and Order SVU, “blaming the victim” is bad, bad, bad. We always talk about blaming the victim in the context of rape and sexual assault. With sexual assault, there are victims and attackers, and the blame should always lie with attackers. But with STD transmission, there usually aren’t “attackers.” Except maybe in a few, extremely rare cases, people do not intentionally spread HIV in order to harm others. The majority of people who spread STDs aren’t aware they have one. For those that are aware they have an STD, they may fail to disclose their status for a number of reasons, not the least of which is shame resulting from social stigmatization of STDs. In Benaissa’s case, public disclosure could have had repercussions for her career as a pop singer. But even people like Benaissa, who did not take adequate steps to protect her partners, are themselves victims. They too were infected with HIV, possibly by someone who was similarly withholding that vital information.

With rape and sexual assault, victims (or survivors) are not in control of the situation. But when you’re talking about consensual sex, the onus usually falls on the individual to protect him or herself. Safer sex products, like condoms, are not that hard to get a hold of. A lot of people work very hard to make sure that condoms are available and affordable. Many health providers will give them out for free. I recognize that there is a bit of a gender imbalance here, since most condoms are “male” condoms and hetero women have a bit less control over whether their partner will wear one. But women can still buy and carry male condoms, use the female condom, and choose not to have unprotected sex — a decision everyone SHOULD be able to make and that all partners SHOULD respect.

One cannot really take precautions to keep one’s self safe from rape and sexual assault because assault can happen anywhere, at anytime, with anyone no matter what you are or aren’t wearing, how much you were or weren’t drinking, or whether you were or weren’t in a “safe” neighborhood. But one CAN take precautions to keep one’s self safe from STDs and since we can, we each shoulder the responsibility to protect ourselves.

This is not to say that those who knowingly transmit STDs are off the hook. I think most of us would agree that they are under a moral obligation to inform their partners before having unprotected sex. But should a moral obligation necessarily become a legal obligation? As far as I know, there is no criminal law in the U.S. or Germany that obligates one to inform all sexual partners of his or her HIV status. (If I’m wrong, please correct me.) Would the moral obligation still apply if they are using protection? Would a criminal law?

HIV and STD transmission turns victimhood on its head. When perpetrators are victims and the victims are in control of their own choices, we cannot be afraid to emphasize personal responsibility for fear of blaming the victim. It’s a lot easier for you to commit to using protection than it is for someone else to disclose their HIV status. Prosecuting those who fail to disclose will not do anything to help fight the spread of STDs, but encouraging personal responsibility sure will.

Is it time for routine HIV testing?

A recent study says that many HIV positive patients in the US and Canada are getting diagnosed too late for modern treatments to be fully effective. The US News writes:

The public health implications of our findings are clear,” study author Dr. Richard Moore, from the Johns Hopkins University School of Medicine in Baltimore, said in a news release. “Delayed diagnosis reduces survival, and individuals enter into HIV care with lower CD4 counts than the guidelines for [initiating] antiretroviral therapy.” A delay in getting treatment not only increases the chance that the disease will progress, but boosts the risk of transmission, he added.

This study has got me thinking about routine HIV testing, a subject I mulled over quite often while writing my undergrad senior thesis on HIV/AIDS public health policy. The CDC recommended routine HIV testing for all Americans in 2006, but because of the complicated history of the AIDS epidemic and resulting HIV public health policy in the U.S. we are still hesitant to take that step. Here’s some background.

Historically, public health existed in order to protect the public from the sick. Traditionally, Americans have understood that in the case of certain easily transmitted diseases, the health and safety of the general public outweigh an infected person’s individual rights. Authoritarian strategies like mandatory testing, name reporting, contact tracing, and even quarantine are old hat for many STIs and other communicable diseases like TB. There’s a reason the CDC is called the Center for Disease Control; they don’t mess around.

In reality, most of us do not experience these more extreme measures of control in our daily lives. Most of the time, you don’t need to pass a syphilis test to obtain a marriage license and hospitals and clinics often offer confidential or anonymous STI testing. Still, a virulent strain of TB can get you landed in quarantine.

The only communicable disease that is legally protected from these types of authoritarian public health controls is HIV/AIDS. Instead of existing to protect the public from the infected at any cost, HIV/AIDS public health law is designed to protect the infected from discrimination. This is largely due to it’s unique history as a disease that suddenly appeared in the 1980s and decimated an already marginalized and stigmatized group (gay men).

A tactic such as mandatory testing would have been a huge threat to the gay community, since at that time being HIV positive was an indicator that one was gay, and it was not quite as safe to be “out” as a gay man in the 1980s. (Not that it is always safe now, but I would argue that general tolerance and acceptance has dramatically improved.) But even beyond the gay issue, people were scared of HIV/AIDS because so much about it was yet unknown. Most did not understand how it was transmitted, and were afraid to come in contact with those who had it. They did not want them in their offices, working in restaurants, or going to school with their children. Hello, discrimination. There is also a lot more to it than that, including the aversion to sick people thanks to the idea that morality and illness are somehow connected (check out Susan Sontag’s Illness as Metaphor). But I digress…

Thanks to the efforts of gay rights leaders, activists and politicians of the 1980s, mandatory HIV testing is illegal, confidentiality of one’s HIV status is paramount, and public health officials cannot separate folks with HIV from the rest of society in any way. This was groundbreaking legislation and policy, and at the time completely necessary. But is it still necessary?

In the late 1990s and early 2000s, the strong emphasis on confidentiality and individual rights began to relax. This was perhaps natural as the fury of the AIDS epidemic of the 1980s began to die down as well. Still, some important changes began to occur. First, a new drug that was effective in reducing the transmission from mother to newborn led the CDC and others to endorse HIV screening for pregnant women, and many states began doing so. And the measures were pretty effective in helping reduce the rates HIV transmission to infants.

In an article called “Applying Public Health Principles to the HIV Epidemic.” from the New England Journal of Medicine (2005), Thomas Friedman, the then Health Commissioner of New York, wrote:

Although stigma and discrimination on the basis of sexual orientation continue, advocacy has resulted in substantial progress, including antidiscrimination statutes in many states and increasing numbers of jurisdictions that recognize the rights of domestic partners. The world has changed in the past 25 years, and approaches to HIV prevention must also change.

That article recommended a switch to routine HIV testing in addition to a re-commitment to prevention methods, such as condoms, sex education, and needle exchange programs. Routine testing would mean that your yearly physical would also include an HIV test. You would of course be able to opt out, but the idea is that it would be treated as a common, routine, health practice.

By 2005, the CDC was recommending routine testing for high-risk groups and individuals. In 2006, the CDC issued a recommendation for the very first time that we begin routine HIV testing for all Americans. Considering the history of HIV public health policy, that was kindof a big deal. But as you can see, it didn’t really happen.

HIV testing is still a completely voluntary thing, and while some of us are good about getting tested regularly, most Americans get tested once or twice in their lives, or not at all. And this is part of the problem identified by this new study. Is routine testing the solution to this problem?

Routine testing would help those diagnosed receive treatment early enough to be most effective. It could also help prevent unknowing transmission. There is a chance it could even help reduce stigma through normalization. But are we ready?

What do you think?

If you are by any chance a public health nerd and would like to read my undergrad senior thesis: “Is AIDS Special? A New Paradigm of Public Health and Individual Rights,” you can download it here. I warn you, it’s long. Just don’t plagiarize me, bro.

Doing my part for global health

I recently discovered the Fully Sick Rapper through Facebook. and have developed a huge internet crush on him! Christiaan VanVuuren, aka the “Fully Sick Rapper,” is an Ozzie who had contracted Tuberculosis (TB) on a trip to South America. He has been in quarantine for months, and maintains his sanity (or lack thereof) by creating hilarious rap videos about his life in quarantine and sharing them on Youtube. I put one on while I was checking email this morning, and realized that – wait a second – I should be taking my weekly malaria pill!

I’m leaving for a trip to Belize (in Central America) on Wednesday. A couple weeks ago, I was looking up travel tips on WikiTravel. I found a note about checking the CDC’s Travelers’ Health website, where I found information about Belize by click on “Destinations.” That’s how I learned that there is a risk of contracting malaria in that area, and that preventative antimalarial drugs are recommended.

We have heard a lot lately about pandemics thanks to H1N1. Despite the fact that most people consider the H1N1 scare an “overreaction,” flus and other viral communicable diseases like TB are a big fucking deal, especially when drug-resistant strains develop and spread to countries unequipped to treat them. It’s also important to realize that other diseases, like STIs can also be passed around through international travel. Randy Shilts, author of And the Band Played On, theorizes that HIV came to the United States in 1976 during the national bicentennial celebration. To celebrate the country’s 200th birthday, New York harbor was crammed with Navy ships that had been all over the world, and a whole heck of a lot of world-traveled sailors partied hard in the same city. Four years later, gay men began to show symptoms of what we now understand to be AIDS.

The World Health Organization and plenty of NGOs work hard to prevent the international spread of disease, especially of communicable disease like TB, H1N1, avian flu, etc. But some responsibility lies on the part of the individual. Now that we live in such a global society, where people can hop planes and cross oceans in a matter of hours, we are each responsible for protecting ourselves and others when we travel. For me, this meant doing a little research and getting a prescription for anti-malarial drugs before my trip. It also means remembering to TAKE the pills, which I almost forgot until the Fully Sick Rapper reminded me.  So, next time you travel, do your part to prevent the spread of disease and follow these steps:

  1. Research the country you are traveling to for information about health risks, vaccines, and other preventative health care. I think the CDC Travelers’ Health page is great for this.
  2. Follow up.  Get your immunizations and fill your prescriptions.
  3. Comply with preventative treatment. (Don’t forget to take your pills!)
  4. Comply with treatment if you do get sick. (Don’t be like that guy who found out he had TB and had to be forcibly quarantined after he hopped a plane to Europe and put hundreds of people at risk.)
  5. Bring condoms. This rule may not apply to everyone, but it definitely applies to anyone who hopes meet someone on their trip. It also applies to anyone staying in youth hostels because even if you aren’t going to need them, someone you meet in the hostel probably will.

Thanks for listening to this long-winded public service announcement. Safe travels!

When silence is criminal

A man in Indiana named Tony Perkins is facing felony charges for having sex with as many as 100 partners without telling them he was HIV positive.  This case instantly made me think of the story of Gaetan Dugas, also known as “Patient Zero.”

Dugas was a French-Canadian flight attendant in the 1970s and 1980s.  He was gay, and a notorious frequenter of bath houses, especially in the San Francisco scene.  He was often described as a beautiful, charming man.  When the AIDS epidemic hit in the 1980s, epidemiologists began looking for its source.  Their research led them back to Dugas.  Due to his position as a flight attendant, he traveled and had sex all over North America.  He may not have been the first North American to contract HIV, but he was most responsible for spreading it far and wide.  Of course, at the time, no one had even heard of AIDS or HIV.

When Gaetan Dugas was told that he was “Patient Zero,” and responsible for the spread of AIDS throughout North America, he refused to believe it. He was angry. He refused to change his behavior–after all, he didn’t even feel sick. As the AIDS epidemic raged on, and Dugas began to show symptoms of the AIDS virus, he lashed out.  He went to bath houses in San Francisco and had anonymous, unprotected sex with the lights off.  Then at the end, he would turn the lights on so his partner could see the lesions on his face (kaposi’s sarcoma – an early AIDS identifier). Then he would say, “I have AIDS and now you do too.”

The San Fransisco gay community ran him out of town. United States public health and law enforcement officials tried to arrest him, but he went back to Canada, where he was safe from prosecution. He lived there until he passed away from AIDS related illnesses, and was never prosecuted.

Learning that you have an STI is not the same as learning you have diabetes.  STIs are difficult to deal with in part because of the physical and health aspects, but more importantly because of emotional aspects.  Contracting an STI means that someone gave it to you–someone infected you–making you a victim.  And feeling victimized or betrayed, often by someone you trust or care for, is often traumatic.  But society does not treat you like a victim.  Society treats you like a leper,  a dirty whore who got what they deserved, or even worse, the butt of a joke.

Even public health officials and educators–the folks who are most invested in STI education and prevention–make you feel like shit. STI prevention campaigns have compared unprotected sex to “getting in bed with tarantulas” or “getting in bed with Hitler.”  Not only are you a victim, a leper, a whore, and a joke, you are Hitler.  Gaetan Dugas was a victim, and not only did he feel the moral stigma of STIs as punishment for being promiscuous (or gay), he was blamed for the deaths of many, many people–even though we didn’t even know HIV or AIDS existed at the time.  Is it really so surprising that Gaetan Dugas reacted the way he did?

The unfortunate reality is that STIs can be used as a weapon, and those who infect others on purpose should face prosecution for their crime. But it is important consider the overwhelming effect of the shame, betrayal, guilt, and stigma that go hand in hand with an STI diagnosis. Most people do not react as Gaetan Dugas did, using HIV as a weapon of revenge, but for many the shame and stigma associated with STIs makes it harder to disclose that information to their partners.

In this interview on ABC news, Tony Perkins said, “The only thing I did was want a relationship and if you tell people you have this they treat you like you got the plague and all I wanted was someone to care about me and if you tell them you got this they wont talk to you.”

To be clear, I do not excuse the actions of Tony Perkins, who confessed to 2 counts of failure to disclose his HIV status, and allegedly put over 100 women at risk. Still, he was no Gaetan Dugas. He may have been criminally reckless and undoubtedly selfish, but I do not think he intended to use his HIV as a weapon of revenge the way Gaetan Dugas did. (One report says he used condoms every time.) Instead, this is an extreme example of the consequences of stigmatizing sexually transmitted infection.  Shaming people with STIs into silence puts everybody at risk.