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The Shame in a Name: Addressing a public health crisis, normalizing a social reality, by Cara Bayles
May, 2008: The Weekly Dig
The Center for Disease Control and Prevention (CDC) recently declared sexually transmitted infections (STIs) an "epidemic," citing the 19 million new infections that occur in the US annually. Gonorrhea and chlamydia are the No. 1 and No. 2 most reported infectious diseases in the country. An estimated one in four people have herpes. Approximately 20 million people in the US are infected with human papillomavirus (HPV), and at least half of sexually active people will acquire genital HPV.
In March, the CDC announced that one in four teenage girls have chlamydia, HPV, herpes or trichomoniasis. Fifteen percent of that group had more than one. Among sexually active teenage girls, the number jumps to 40 percent. Most medical professionals were not surprised by the report; some have challenged it because the one in four ratio is generally assumed to apply to teens across gender.
Officials who presented the report at the CDC's 2008 National STD Prevention Conference stressed the importance of teens postponing sexual activity, sticking to monogamous relationships, using condoms and getting tested regularly. Dr. John Douglas, one of the CDC presenters, mentioned cultural complacency about the epidemic. "It's sort of impolite and still stigmatized to talk about STDs," he said. "We continue to have major national debates about the best way to educate the population. There continue to be extraordinary misperceptions about who's at risk for an STD."
Heather Corinna—a woman's health counselor, sexuality activist and the creator of Scarleteen (one of the first sexual health websites)—says such cultural barriers reinforce stigmas and misinformation. "That the releases even called sexually transmitted infections 'STDs' is telling, since for most, 'STI' is the preferred and more accurate term," she says. "The term 'disease' is really supposed to address an illness which is progressive, and most sexually-transmitted infections are not, particularly when treated."
Jen Slonaker, director of education for Planned Parenthood of Massachusetts agrees. "Calling it an STI is more accurate and helps to destigmatize it," she says. "'Disease' has very different connotations than 'infection.'"
And while it may sound like semantics, the effort to take the sting out of an STI diagnosis aids public health, according to Dr. Alfred DeMaria, director of Communicable Disease Control at the Massachusetts Department of Public Health (DPH). "It's not ethical from a medical standpoint to be judgmental about people's behavior," he says. "People aren't going to cooperate with you if you have a punitive or judgmental approach."
Massachusetts STI data focuses on bacterial infections, so it's not as thorough as the national study. The incidence of syphilis remains low (20 cases statewide in 2007), gonorrhea's numbers hover around 1,300, and chlamydia rates are climbing (10,674 cases in 2005 to 11,968 in 2007); all in keeping with national trends. While Massachusetts' rates for HPV, herpes and trichomoniasis are not available, DeMaria says the national infection rate for teens can be assumed to be true in the commonwealth. "They're really estimates. Of the 25 STDs out there, they picked the four major ones," he says. "But we have no reason to believe we're any different than the national average."
If so many sexually-active teenagers have an STI and probably will remain sexually active, how do we negotiate both public health concerns and social stigmas?
Corinna says it's a question of cultural attitudes. "I can tell someone I'm counseling that there is nothing dirty about them for having an STI all I want, but a lot of the time, I'm still in the minority opinion," she says. "Setting aside the more prevalent attitudes about STIs and those who have them—and understanding why attitudes of stigma are not credible and do harm—is a challenge for most people, especially young people."
Associating any disease with any community, particularly a marginalized one, is always dangerous. So, when the CDC report referenced a huge racial disparity among the women it surveyed (almost half of black adolescent females have an STI), researchers were careful to clarify their research. Douglas insisted race itself was not a factor. "The availability of clinics, transportation to the clinics, do you have health insurance to pay for your care when you get to the clinics? Do you have other competing life issues like unemployment and lack of child care and single-parent homes that may result in delayed seeking of care?"
Treating such a prevalent trend without stigmatizing a specific community can be tricky, but John Vincent, manager of education and prevention at Fenway Community Health Center, hopes we've learned from the past. "If you look at HIV, racial and sexual minorities are more impacted. This is driven by economic barriers, access to care, not an innate quality of those populations," he says. "We have to recognize trends, so we can divert resources where they're needed. But we have to do so in a way that doesn't stigmatize a community. And that's not an exact science. It requires a little bit of artistry."
Public health workers are hoping that Massachusetts' mandated universal health insurance will help combat inequities. Vincent says that because the mandate was established in January, the results aren't apparent yet. "But I can say anecdotally, it's very clear that people who got health insurance at Fenway at the beginning of the year are more likely to get testing than if they didn't have that," he says. "We encourage people to take advantage. Prevention is important, but wearing condoms and safer sex practices aren't universally fail-proof. So we tell people to get a full STD screening every six months. You should get tested often if you get laid often."
Many who are already infected must negotiate when to disclose that information to their partners. A niche of STI dating sites have popped up, among them, positivesingles.com, stdfriends.com and, perhaps the most inventively named, prescription4love.com.
Ricky Durham created prescription4love for his brother, who had Crohn's disease and never knew when to disclose his colostomy bag to potential partners. Durham says his site, which allows members to disclose conditions on their profiles, can relieve that anxiety. "If I told someone I had an incurable STD, chances are, they wouldn't want to date me anymore. They don't look at the person anymore, all they're thinking is 'I might get this,'" he says. "The benefit with this is there's nothing to reveal, it's not like, 'Oh my god, when am I going to tell them?'"
But Corinna says, especially with fairly benign infections like herpes and HPV, such sites raise concerns about segregating people needlessly. "Both those viruses will likely lose some steam due to how common they are and how much we're all exposed to them. HIV, obviously, is not at all benign. But with the right management tools and partner cooperation, transmission can be prevented. It's not rocket science," she says. "I think if people with any of those infections want to opt into those dating programs and feel more comfortable dating that way, there's no reason not to support that. Rather, it's forcing anyone into that, making it seem like that's the only way to protect people, and the messages those programs might purposefully or inadvertently send, that we have to be cautious about."Vincent says a culture has formed around HIV that doesn't apply to other STIs. "It's completely reasonable for HIV-positive people to enjoy the fraternal aspects of being in that population. There's something important and sacred about it," he says. "But I don't think that having HPV or herpes should limit who you date. It's not the same thing. To set anyone aside and say 'You should stay with your own kind' is potentially dubious ... but not universally so."
DeMaria says the DPH is trying to address STIs on many fronts. "How you get your hypertension treated is your business," he says. "The treatment of your STD is important to us, because you got it from someone and you can give it to someone else. That's what makes it a public health issue."
The DPH recommends Gardasil, the vaccine that can protect against some cancerous strains of HPV, for women 9-26 years old (it can't help people who have already been exposed to the virus). DeMaria says Gardasil is covered by MassHealth. "We provide it for girls age 9-18 who are on Medicaid or don't have insurance, because they fall under the Vaccines for Children program," he says.
The DPH has also offered anonymous partner notifications for syphilis, gonorrhea and chlamydia since the 1930s. "We have disease intervention specialists meet with a patient, talk to them about sexual partners and counsel them on how to talk to them," DeMaria says. "If they're uncomfortable doing that, DPH specialists will talk to the partners themselves."
DeMaria says adolescents have remained a priority over the years. In the mid-'90s, the DPH trained peer educators in Springfield. "They found a significant concern among young people, but a low level of understanding," he says. "Most of these teens wanted to know more, and wished they could talk to their parents." Now, the DPH is targeting teens with websites, like std411.com and yourhealthstyle.com. "It's a moving target. We're trying to adapt to the media that interests them," says DeMaria. "We're also working with colleagues in the Department of Education, trying to get more information across a variety of topics in school curriculum."
In 2006, 86 percent of secondary schools required some health education for students, and of those, 64 percent taught STI prevention to middle schoolers and 85 percent taught it to high school students. Drug and alcohol prevention, nutrition, fitness, mental health, violence prevention, HIV prevention, "growth and development," and pregnancy prevention were (in that order) all taught more frequently.
While the Department of Education (DOE) doesn't require health education in core curricula, it has created a comprehensive health curriculum framework, which explains that sex ed should "address decisions about abstaining from and postponing sexual intercourse. Knowledge about how to avoid sexually transmitted infections that endanger one's health and well-being as well as that of a partner is an important component of instruction. Communication skills can support such decisions."
Slonaker says not mandating a set curriculum creates educational inequities. "There's no standard for health or sex education across the state right now," she says. "We call it an accident of geography. Your district often determines how good your education is." Rep. Alice Wolf, D-Cambridge, has pushed legislation to make health part of the core curriculum in Massachusetts public schools for the last two years, but it stalled in the legislature and failed as a budget item.
State law allows parents to pull children out of any aspect of health curriculum for religious or cultural reasons, but exemptions are rare; 38 percent of principals reported no students had been exempted by parental request and 54 percent reported that 1 percent or less were exempted.
Last September, Gov. Deval Patrick didn't authorize a budget item for a $700,000 federal grant proposal for abstinence-only sex ed programming. The National Abstinence Education Association launched an ad campaign, claiming, "Deval Patrick Doesn't Want 11-Year-Olds Taught to Say 'No' to Sex."
According to the Sexuality Information and Education Council of the United States, studies indicate abstinence-only programs don't affect when teens become sexually active. Corinna says they also place dangerous value judgments on health choices. "So long as who does and doesn't have sex is given moral value, we've got another huge barrier," she says. "Since having an STI means that in many cases, sex was electively chosen, if those who choose to have sex are of lesser value than those who do not (or who do only in certain socially-sanctioned scenarios), then those with STIs will be doubly stigmatized."
Planned Parenthood of Massachusetts has been developing public school sex ed courses for 30 years. They're revamping their curriculum now, a 27 session, three-year program for middle school students, called "Get Real."
"We talk about abstinence as the only way to know that you're protected from STIs and pregnancy, then we talk about other protection methods, how condoms are the only method that's able to protect against pregnancy and STIs," Slonaker says. "If students think 'it won't happen to me,' or 'it doesn't happen in my school,' they're less likely to protect themselves."
The curriculum weaves relationships and communication skills into every lesson. "We encourage a teen who's going to be sexually active to be in communication with their partner," says Slonaker, "in all the different ways that may mean."
Slonaker says that education is the first step in normalizing and preventing STIs.
"We teach about how to protect oneself from an STI, then talk about the importance of seeking health services. If someone notices a change in their body, it's important that they're not afraid to go see a doctor," says Slonaker. "Knowing one in four teens have an STI, it's likely that someone in your classroom might have an STI. So it's important that the lesson isn't to shame them in any way."