Overcome the stigma of herpes with positive messages for patients
Empower patients with news of improved treatment, possible vaccine
Strides are being made when it comes to herpes. New treatments are emerging, and an advanced clinical trial of a potential herpes vaccine now is under way.
Despite these steps, the social stigma of genital herpes is real, measurable, and harmful, according to results of a 2003 national colloquium on the subject. The barriers to tackling genital herpes must be conquered, say public health officials. Population-based study findings indicate 22% of American adults have antibodies to herpes simplex virus type 2 (HSV-2)1,2, and HSV-2 has become the most frequent cause of genital ulcer disease in all regions of the world.3-6
"This meeting confirmed what we have long suspected: Stigma discourages people from getting screened for herpes and other common sexually transmitted infections [STIs] and often delays care-seeking for STI symptoms," says James Allen, MD, MPH, president of the American Social Health Association (ASHA) based in Research Triangle Park, NC. "As a physician, I am very concerned that stigma makes it difficult for people diagnosed with herpes to have honest and open discussion with others, including their health care providers."
Bridging the gap between patients and physicians is vital for improving the management of genital herpes. Recent surveys indicate just 41% of patients are satisfied with current care and support.7
Health care providers are on the front line when it comes to delivering the message that herpes is treatable and manageable and should not be treated as a life-changing event, says Charles Ebel, ASHA’s senior director of program development. He also serves as chairman of the International Herpes Alliance, a global-based advocacy organization.
"A great deal of progress has been made since the early days of the herpes epidemic, but the battle against stigma has seen only the opening shots," observes Ebel.
Look at the problem
Stigma about herpes has a major impact on those diagnosed, reports Ebel, author of the book Managing Herpes: How to Live and Love With a Chronic STD (Research Triangle Park, NC: American Social Health Association; 1994).
"We know from survey research that worries about disclosure are commonplace," he explains. "Studies suggest that up to 30 or 40% of people who have genital herpes do not disclose this to sexual partners. Disclosure rates are even lower with family and friends."8
People with herpes generally do talk to a health care provider, but they may become embarrassed when it comes to discussing such issues as protecting their partner or availability of new therapies, says Ebel. To help patients, address the matter up front, he suggests. While herpes is misunderstood, it is a common infection easily managed by millions of people, he states.
Talk about it
How can you approach the subject of herpes with patients? Consider the following counseling tips:
- Put the infection
"Some people suffer under the misconception that herpes is a rare but serious condition," states Ebel. "A person being diagnosed needs to understand that it is, instead, very common and generally has such mild symptoms that it goes unrecognized."
As many as nine out of 10 of those infected with genital herpes are unaware they have the disease and may only have experienced a mild initial outbreak without recognizing recurring symptoms of the disease. Discuss symptoms of genital herpes, which may include painful or itchy clusters of blisters, bumps and rashes in the genital area, or on the thighs or buttocks.
Explain that the symptoms of the disease may be confused with other conditions such as urinary tract infections, ingrown hair, jock itch, zipper burn, allergic reactions, vaginal infections, a cut or a scratch, or irritation from sexual intercourse or tight jeans.
- Explain the cycle
of latency and reactivation.
Patients should be given the basic facts about how the HSV-2 virus goes through many cycles of latency and reactivation. Though the disease is most contagious during an outbreak, it also can be contagious between outbreaks when no signs and symptoms are present.
"It is important that [patients] understand this, so that they can understand the issue of sexual transmission," explains Ebel. "Many people are puzzled about how they acquired herpes or from whom, and understanding the natural history may help them to realize that herpes can be spread unwittingly by someone who is shedding virus asymptomatically."
- Stress the treatability
A part of the stigma attached to genital herpes centers around its chronic nature, says Ebel. Be sure to discuss with patients that daily antiviral therapy significantly reduces symptoms and asymptomatic shedding.
New research indicates that daily antiviral use with valacyclovir (Valtrex, GlaxoSmithKline, Research Triangle Park, NC) can cut risk of transmission to an uninfected partner by about 50%.9
Results of the international, double-blind, placebo-controlled clinical trial led the Food and Drug Administration to approve a new indication for Valtrex in August 2003 for use in reducing the risk of heterosexual transmission of genital herpes to susceptible partners with healthy immune systems when used as suppressive therapy in combination with safer sex practices.
- Identify the myths.
When working with patients, identify existing understandings and myths about genital herpes, says Dennis Fortenberry, MD, professor of pediatrics and associate director of the division of adolescent medicine at the University of Indiana in Indianapolis.
To identify these myths, he suggests the following approach: "A lot of people have heard different things about genital herpes. What kinds of things have you heard about herpes?" This will allow you to address the myths with pertinent facts. (See resources at the end of this article for helpful information.)
Next, identify the patient’s fears related to having genital herpes, says Fortenberry. Ask patients, "What is most frightening to you about having herpes?"
Talk about the treatability of genital herpes, he suggests. Explain that several medications reduce the frequency and severity of outbreaks as well as reduce risk of transmission to others.
Encourage use of social support, Fortenberry suggests. Say, "Sometimes, it helps to talk to someone else who understands herpes. Here is the web site and phone number of a support group in the area." (See resources at the end of this article for web links and telephone numbers.)
- Stress the positive.
Let patients know that strides are being made in herpes research. More than 35 medical centers across the United States are participating in a nationwide efficacy trial of an investigational genital herpes vaccine that may prevent herpes infection in women.
The trial is examining the Herpevac vaccine developed by GlaxoSmithKline Biologicals, with headquarters in Rixensart, Belgium. In two previous Phase III clinical studies, the candidate vaccine was shown to decrease the risk of developing symptomatic HSV infection in women who were not previously infected with herpes simplex.10
"Improvements in diagnostics and treatments have really given us a better message to share with those infected or concerned about becoming infected with herpes, and with the real possibility of a vaccine becoming available in the next five years, there is a lot of work to do," states Ebel.
- Fleming DT, McQuillan GM, Johnson RE, et al. Herpes simplex virus type 2 in the United States, 1976 to 1994. N Engl J Med 1997; 337:1,105-1,111.
- Armstrong G, Schillinger J, Markowitz L, et al. Incidence of herpes simplex virus type 2 infection in the United States. Am Epidemiol 2001; 153:912-920.
- Beyrer C, Jitwatcharanan K, Natpratan C, et al. Molecular methods for the diagnosis of genital ulcer disease in a sexually transmitted disease clinic population in Northern Thailand: Predominance of herpes simplex virus infection. J Infect Dis 1998; 178:243-246.
- Chen CY, Ballard RC, Beck-Sague CM, et al. Human immunodeficiency virus infection and genital ulcer disease in South Africa: The herpetic connection. Sex Transm Dis 2000; 27:21-29.
- Mwansasu A, Mwakagile D, Haarr L, et al. Detection of HSV-2 in genital ulcers from STD patients in Dar es Salaam, Tanzania. J Clin Virol 2002; 24:183-192.
- Wald A, Link K. Risk of human immunodeficiency virus infection in herpes simplex virus type-2 seropositive persons: A meta-analysis. J Infect Dis 2002; 185:45-52.
- Alexander L, Naisbett B. Patient and physician partnerships in managing genital herpes. J Infect Dis 2002; 186 Suppl 1:S57-65.
- Green J, Ferrier S, Kocsis A, et al. Determinants of disclosure of genital herpes to partners. Sex Transm Infect 2003; 79:42-44.
- Corey L, Wald A, Patel R, et al. Once-daily valacyclovir to reduce the risk of transmission of genital herpes. N Engl J Med 2004; 350:11-20.
- Stanberry LR, Spruance SL, Cunningham AL, et al. Glycoprotein-D-adjuvant vaccine to prevent genital herpes. N Engl J Med 2002; 347:1,652-1,661.
The Herpes Resource Center, a service of the American Social Health Association (ASHA) of Research Triangle Park, NC, offers several resources designed to increase public awareness and promote education about herpes. Check out the following:
- Web resources. Go to the ASHA web site, www.ashastd.org; click on "Programs and Resource Centers", then click on "Herpes Resource Center." Take a look at "Herpes — Get The Facts" for straightforward information about the infection, detection methods, and treatment.
- Telephone hotline. By dialing (919) 361-8488, free information is available from trained health communication specialists about transmission, prevention, and treatment of herpes. The hotline also provides support for emotional issues surrounding herpes such as self-esteem and partner communication. The hotline is open from 9 a.m. to 6 p.m., Eastern Time, Monday through Friday.
- Local support groups. The Herpes Resource Center has an affiliated network of local support groups for people concerned about herpes simplex virus. The groups provide a safe, confidential environment where participants can get accurate information and share experiences, fears, and feelings with others who are concerned about herpes. Check the ASHA web site for state-by-state listing of such groups.
- Publication resources. Visit the Resource Center site for access to ordering herpes-related publications, such as the "Herpes Fact Pack," which includes an annual subscription to the helper, a quarterly publication; Understanding Herpes, a 16-page booklet; and the book, Managing Herpes: How to Live and Love with a Chronic STD. Cost for the Fact Pack is $46.95, which includes shipping and handling. Orders may be placed on-line, printed out, and faxed to (919) 361-8430 (Attention: Customer Service) or mailed to ASHA Resource Center, P.O. Box 1382, Research Triangle Park, NC 27709.