STD Quarterly-You can help bridge the herpes 'disconnect'

Those most at risk underestimate their chances of getting the disease

As you discuss your patient's sexual history, she tells you that she has had five partners in the last seven months. When you ask her about herpes, she says she has not been at risk, since no partner had any signs of the disease.

Welcome to the "herpes disconnect," a term coined by health professionals who are all too familiar with the fact that while most Americans may have some knowledge of herpes, they underestimate their risk for contracting the disease.

"Three out of four people will tell you the ways that genital herpes is transmitted and will tell you that having multiple partners is a risk factor," says Linda Alexander, PhD, FAAN, president of the American Social Health Association (ASHA) in Research Triangle Park, NC. "But when you ask them about their own risk, all too many throw out the facts and minimize the risks."

80% to 90% don't recognize disease

According to ASHA, genital herpes is one of the most widespread sexually transmitted diseases in the United States, and it is estimated to infect 50 million Americans, with 1 million new infections each year. As many as 80% to 90% of those infected fail to recognize herpes or have no symptoms at all. (For an overview of the U.S. prevalence of the disease, see Contraceptive Technology Update, STD Quarterly supplement, January 1998.)

Why is it important that providers help bridge the herpes knowledge gap? A recently published study reveals that people who appear asymptomatic and who likely don't know they have the disease are just as likely to be infectious as people who know their diagnosis.1

"We still have work to do in educating the public," says Hilary Baldwin, MD, vice chair and associate professor of clinical dermatology at the State University of New York Health Science Center at Brooklyn. "We also need health professionals to do a better job identifying genital herpes in their patients, as too many patients go undiagnosed and untreated."

ASHA just conducted a national Web-based survey of 1,414 men and women, with more than half the respondents between ages 18 and 39. Findings show that more than 70% of those polled correctly identified the major ways in which herpes is spread, including oral sex and unprotected intercourse. Among respondents not previously diagnosed with genital herpes, only 27% of men and 23% of women believe they are at risk of contracting the disease. About half of respondents were unaware that condoms provide incomplete protection against genital herpes, and 41% did not know that herpes can be spread from mother to baby.

"While a majority of respondents feel comfortable discussing herpes with health care providers, we'd like to see more of these discussions take place in a preventative context," Alexander says. "In this survey, among the nondiagnosed, only 9% of men and 14% of women reported that their health care provider initiated discussions on herpes."

The ASHA survey also reveals that people are unlikely to talk about herpes with family members or friends, Alexander reports. Just 6% of respondents feel comfortable talking about herpes with a family member, and only 13% indicate being comfortable discussing it with friends. "The major challenge with herpes is getting people to talk about it and feeling responsible for protecting themselves," asserts Alexander.

In other key findings from the study, acceptance of personal risk was highest in the youngest age sets. Some 44% of those between ages 18 and 29 scored themselves at risk, compared with 35% of those between ages 30 and 49.

One in four survey respondents (26%) had been diagnosed with herpes; about half reported taking medication to treat it, the study results reveal. An estimated 25% of U.S. adults have genital herpes, according to ASHA.

Clear up misconceptions

What are the most common misconceptions about herpes? Terri Warren, RN, MS, owner of Westover Heights Clinic in Portland, OR, and medical director of ASHA's Portland herpes support group, offers her top five list:

• If you have herpes, you will know it.

• Everyone who has herpes has symptoms.

• Herpes symptoms are dramatic.

• You can only spread herpes when you have sores.

• Herpes is a rare disease.

The ASHA survey shows that among those polled who are undiagnosed with the disease, 17% of men and 22% of women report having been tested for herpes. However, it is a common misconception that herpes testing is part of routine physical exams, says Alexander.

"Women think that when they have an annual gynecological exam, it includes testing for STDs, and when people have a battery of laboratory tests, they assume they are being tested for STDs," says Alexander. "Helping people understand that testing for STDs and specifically for herpes is not a routine matter is something we have to work on."

Most patients at Westover Heights Clinic say they have been tested for herpes during their last annual exam, but more than 90% of the time, they have not, says Warren.

"We offer herpes serologic blood testing for everyone, and if they decline, we make a note that they declined," she states. "I think that if providers are not offering serologic testing in this day and age, which they should be, then they need to make a note in the chart that they did not offer this test." (See article on new tests for herpes simplex, at right.)

Once a diagnosis of herpes has been made, what can you do to help your patient?

ASHA serves as a good resource for information, with telephone and Internet support for those living with herpes, says Alexander. It coordinates more than 80 local support groups, called HELP Groups, in the United States, Canada, and Australia, which help people gain understanding of the disease. For those in rural areas, the Internet provides interaction through on-line chat groups at America Online and WebMD, says Warren.

The ASHA HELP Groups offer a safe, confidential place where people can get accurate information and share experiences with others who have the infection. According to ASHA, people with herpes often feel that they must "go it alone." The groups allow an open forum for people to discuss feelings of crisis and isolation, denial and depression; thoughts of anger and resentment toward the person who infected them; perceptions of loss, real or imagined, of future romance or sexual freedom; awareness issues about lifestyle and relationships; perspectives on living with herpes; and information on medications and therapies.

The most important thing providers can do is provide information to help patients change their perceptions about herpes, Warren says.

"I think that if people think about herpes as a disaster, they will feel like their life is ruined," she notes. "But if they learn to think about it as a manageable, common, nondangerous disease, then they won't feel as panicky and distressed."


1. Wald A, Zeh J, Selke S, et al. Reactivation of genital herpes simplex virus type 2 infection in asymptomatic

American Social Health Association, P.O. Box 13827, Research Triangle Park, NC 27709. Phone: (919) 361-8400. Fax: (919) 361-8425. Web: ASHA offers free herpes counseling through the National Herpes Hotline, (919) 361-8488, from 9 a.m. to 7 p.m., ET, Monday through Friday. seropositive persons. N Engl J Med 2000; 342:844-850.