The Helper

  • Increase font size
  • Default font size
  • Decrease font size
The Helper

Susan Martin of Tampa HELP

Print PDF

A wired world, coupled with shifts in what many people seek in support, has created a challenging environment for many of ASHA’s HELP Groups. For example, the attendance of Tampa HELP (one of the oldest of the ASHA-affiliated groups) has declined to an extent that the group decided to suspend operations.

The group’s coordinator, Susan Martin, chatted with The Helper recently and reflected on more than 25 years of offering support and service through her group. Despite changes to the HSV support landscape, she concludes the essential messages needed by patients and partners remain much the same.


The Helper: Over the last several years, a number of HELP Groups have reported declines in attendance. Why do you think that’s happening?

Susan Martin: With our group, attendance started falling off as soon as the Internet really took off. We were at our peak in the late 80s through early 90s, when up to 30 people attended meetings. More recently, we’ve had fewer than five. Being online makes it much easier for people to connect, especially locally.

The number of HSV groups and forums currently available online is large, and seems to be growing. Can their success perhaps be explained in part because chatting with someone on the Internet seems less daunting than attending a meeting in person?

I think so. Over the years I’ve had people hiding in the bushes outside the building, to make sure we’re normal people going inside! I do understand that it is hard to come into a group setting like that. Still, these days there are many herpes social groups that are thriving and involve face-to-face meetings, whether it’s dating or just getting a group together and going to dinner.

Talk about the impact of herpes groups that focus more on social activities, including dating – is the traditional ASHA model of education and support still as relevant?


I think the education piece remains critical, yes. When dealing with herpes, people sometimes think if they have a social outlet, that’s really all they need. It’s still important for people to learn all they can about HSV, because if you get the education it empowers you to go out there and be who you want to be. The more someone learns about herpes, the less scary it seems, so getting the right information about testing, treatment risk reduction, and so on should be an essential component of any herpes support or social outlet.

Thinking back on your years of service, what is the most important message people need to hear when first diagnosed with herpes?

First, they need to realize how normal herpes is, how common this virus is.  When someone is initially diagnosed with herpes they tend to think they’re unique, they’re the only one who’s gone through those feelings and emotions. It’s easy to feel like it’s you against the world, so an important first step is in understanding just how prevalent HSV is.

Of course, a big problem there is the majority of people who have the virus are unaware. I think this is where support groups are important because it allows people to see normalcy–others with herpes who are dating whomever they choose, getting married, having children, and living their lives. Having herpes precludes none of that. It’s important not to feed a sense of isolation.

Read more about ASHA HELP Groups at ASHA's website. Also visit ASHA’s HSV Information and Support Forum.

 

All About Herpes Testing: An Interview with Rhoda Ashley Morrow, PhD

Print PDF

An important first step in managing genital herpes is getting an accurate diagnosis. While that may seem like a simple concept, it can be more difficult than it appears.  Even for many healthcare providers, knowing when to test, which test to use, and how to appropriately interpret test results can cause some confusion.

To help sort through and clarify some of the issues around herpes testing, The Helper spoke with a well-known expert on the subject, Rhoda Ashley Morrow, PhD, Professor of Laboratory Medicine at the University of Washington School of Medicine. Dr. Morrow has done extensive research in the area of herpes testing and offered her expertise and insight here on a subject that can be challenging to patients and providers alike.

Which test is best?
The development of highly sensitive, type-specific serologic (blood) tests for herpes in recent years is certainly an important breakthrough in accurately diagnosing herpes. Yet for patients experiencing signs and symptoms they suspect to be herpes, the best test may be virological rather than serological. As Dr. Morrow notes, “If people are symptomatic, serology is not always the best choice. The ideal test for people who are symptomatic is a culture or PCR [polymerase chain reaction]. If you have a lesion, you want to have it tested…If you have a positive test with a PCR or a culture, you really don’t need serology.”

Of course, there are some limitations for both viral culture and PCR. The latter, while highly sensitive, can be expensive and may not be easily available in all areas. With viral culture, accuracy is dependent upon timing. The best samples come from lesions that have not started to scab or crust over. Wait until the lesion has begun to heal, and the result may be a false negative. For those with recurrent lesions, one option offered by some specialty clinics is to take a swab test kit home and gather a sample yourself at the beginning of any symptoms. PCR, if available, is more sensitive than viral culture and transport conditions are not as critical for the accuracy of the test.  So PCR is the preferred test for recurrent lesions, whether sampled by the patient or the clinician.

So while a patient experiencing typical lesions is a clear scenario for a PCR or culture test, many experience recurrent, less recognizable signs and symptoms. For these symptomatic patients, serology might be the answer. “I do feel that there is a clear role for serology to play in the person who has recurrent, troubling symptoms,” says Dr. Morrow. “If you’re having itching or pain, or some kind of non-specific symptoms, I do think that serology can be very helpful in that scenario, since a positive culture may be difficult to obtain.”

But what about those without symptoms, who may have other reasons for getting tested? For those people, Dr. Morrow notes, “My first question is, are you clear on why you are getting this test? If you’re asymptomatic, and in a long-term monogamous partnership, why are you interested in herpes and should your partner be involved in this testing? If you have a new partner who wants to know your status, that’s legitimate. I think that both partners should be tested in that case.”

When these partners go in for a test, it is quite likely that they will be tested with one of the two most widely used tests available–the Focus ELISA (trade name HerpeSelect®) or the Trinity ELISA (trade name Captia™). These tests detect and measure IgG (Immunoglobulin G) antibodies and provide an index value–a number that is read to be positive or negative. But it often isn’t that simple.

“In general,” Dr. Morrow explains, “the more antibody you have the higher the index value.” Yet while this concept is relatively straightforward, the index number can cause a good deal of confusion. “People use the index value incorrectly in a couple of ways,” Morrow explains. “One is that they infer that a low index value means that infection has occurred recently. That’s not always true. We’ve shown that people with long term infections can have low index values.”

Just as there is no association between index values and the time and length of infection, neither is there an association between this value and recurrences. As Dr. Morrow states, “The second thing that people try to take out of index values is that a high index value means that I’m going to recur a lot. Or some people draw the opposite conclusion and think, ‘I have a high index value, therefore I have lots of antibody and I’m not going to recur very often.’ That’s not necessarily true either. Index values are not predictive of your natural history.”

The function of the index value is simply to indicate whether the test is positive or negative. “Index values are really only to tell whether you have detectable antibody or you don’t have detectable antibody. which leads to the third category of concern with index values, and that is, how high can it be before I can be completely confident that the test is really, truly positive. That’s the big question that people have.”

Stuck in the middle
Certain values are fairly clear cut, according to Dr. Morrow. “If you get an ELISA and an index value is reported to be over about 5 or under 0.9, you should believe the result.” Where questions come are with values in a low positive range. In this range, Dr. Morrow notes, there is some possibility for false negative as well as false positive results. While an index value that falls in this middle range is reported as a positive, and is indicated as such by test manufacturers, experience has shown there can be some room for question. As Dr, Morrow notes, “There’s some overlap, what lab people call ‘the gray zone,’ where there can be some uncertainty. With negatives, if enough time has passed from a possible infection to testing, we’re in good shape. With the higher positives, we’re in good shape. It’s the mid-range or gray zone that can give you problems.”

For those that have an index value that falls in a low positive range, between 0.9 and about 3.5, repeat or confirmatory testing is a reasonable option. Dr. Morrow summarizes the strategy she gives to people: “If, given all of your clinical and sexual history, and clinical presentation, you have reason to doubt a low positive test, your options include getting a confirmatory test.” For those looking for confirmation, there are three reasonably available and moderately expensive options that have data behind them to show they are useful: the Western Blot, Biokit Rapid assay, and the Focus recombinant inhibition HSV-2 ELISA (from Quest).

While confirmatory testing can clarify initially inconclusive results, Dr. Morrow cautions that the majority in the middle range are not falsely positive. “It’s good to remind people that most people who test in the gray zone confirm as positive.”

Another issue for people to consider is that of time. While some people will develop enough antibodies to be detected by a serologic test within a few weeks, others may take a few months. For those who have an inconclusive result, a repeat test in a month or two might provide a more clear answer. If the repeat test yields a positive result, it doesn’t necessarily indicate that the initial result was incorrect. As Dr. Morrow explains, “The values less than 0.9 are really quite accurate in those tests. If you come up with a negative, you really don’t have to re-test unless you have reason to feel you may have been recently infected. If you were recently infected, you may not have enough antibodies to show at that point.”

While people who have experienced signs or symptoms may not only accept but also expect a positive result, for asymptomatic patients, a positive may be more difficult to believe. The bottom line for those who question the result: retesting is an option. As Dr. Morrow recommends, if your result is positive, “Do all the things you need to do to put your life around that and move ahead. If it’s a total shock, if you really need to have this confirmed, I think it’s actually worth the money to go get your blood drawn and repeat the test or ask for a second type of test if that’s available.”

While the type-specific IgG serologic tests available are highly sensitive, there always remains some room for error. This, Dr. Morrow explains, is not the fault of the tests or the laboratories but rather “the inevitability of any kind of serum test”

What about IgM?
One test you would not feel confident about, however, is an IgM test. This test looks for IgM antibody, the first antibody that appears after infection. While used to test for other viral infections, IgM testing for herpes has very limited utility. The rate of high positive IgM tests has been a concern. Lacking a good way to definitely identify an uninfected person, it is hard to determine the exact accuracy of these tests. As Dr. Morrow states, “I don’t recommend that people use them. They just aren’t accurate enough. There are a lot of reasons why…Nobody has really been able to make an excellent type-specific IgM test.”

So why are they ordered? Dr. Morrow explains: “Most often, physicians are used to ordering an IgM and an IgG together when diagnosing other infections. We know that IgM comes up early followed by IgG, and then in most viral infections, IgM wanes. So if a person is positive for IgM it means that they recently acquired that infection. But with herpes, IgM keeps re-appearing. About a third of people with recurrent HSV-2 outbreaks have IgG and also IgM.” The presence of IgM is not a good marker of recent infection in HSV infections.

Yet the persistence of IgM testing for herpes isn’t only due to providers following an established custom. Some patients may think IgM can provide additional information, as Morrow notes. “I think patients have a surprising amount of sophistication. They’ve gleaned from the Internet that IgM often means early viral infection. So if you’re afraid you’re infected and your IgG test is negative, you think ‘Well, an IgM test picks up earlier, so I want that one.’” However, another reason not to rely on IgM is that type-specific IgM tests are not available on the market.

In short, patients who look to IgM for answers to the questions of when they were infected will only be disappointed. “Nobody that I know has figured out how to use serology to definitively show who gave what to whom and—when that occurred,” explains Dr. Morrow.

Knowledge is power…and prevention
The test alone can’t necessarily provide all of the answers, and that’s where the help of a provider comes in. While direct-to-lab testing services have become more widely available, allowing patients direct access to testing and results without the intervention of a healthcare provider, this approach is not one Dr. Morrow advocates. “I’m not a fan, simply because there are just so many issues around herpes. Psychosocial, sexual history, it’s a complicated arena. Anyone who has herpes needs to be talking to a good practitioner,” she states. “I know other people feel really strongly that it’s a breakthrough. It may capture somebody who otherwise wouldn’t be diagnosed and for some people, that might be appropriate. On the other hand, I think there are a lot of arguments against it right now.” Specifically, she cites circumstances that would require specialized counseling, such as pregnancy, as well as issues around risks for HIV transmission or acquisition for those with genital herpes.

Providers can also certainly help patients understand and deal with results and address issues and questions that accompany diagnosis—including results that may be unexpected. “It’s actually very surprising how often people who think they have herpes don’t, and how often people who don’t think they have herpes do,” notes Dr. Morrow. In testing couples in the context of research studies, Dr. Morrow and her colleagues have found that, not only are people who have herpes unaware of their infection, but many who thought they were infected were in fact negative. In one large study, she notes, “we were surprised to find couples whose HSV-2 status was reversed from what they assumed. They came in because he thought he had it and she thought she didn’t, and it was the opposite.”

Examples such as this demonstrate how important an accurate test result can be, not only in the context of prognosis and treatment options, but for prevention as well. “You can imagine a scenario where you think you’re positive and your partner tests positive and ends up transmitting to you because you think you’re concordantly positive.” Dr. Morrow explains. Such a scenario highlights the role that testing—for both partners—can play in prevention.

Prevention. Treatment and management options. Prognosis. Peace of mind. There are so many reasons why an accurate diagnosis is so important. With the availability of highly accurate confirmatory tests, and the help of a good provider, there is no reason for you not to get a result you can feel confident about.

Which test is best?
The development of highly sensitive, type-specific serologic (blood) tests for herpes in recent years is certainly an important breakthrough in accurately diagnosing herpes. Yet for patients experiencing signs and symptoms they suspect to be herpes, the best test may be virological rather than serological. As Dr. Morrow notes, “If people are symptomatic, serology is not always the best choice. The ideal test for people who are symptomatic is a culture or PCR [polymerase chain reaction]. If you have a lesion, you want to have it tested…If you have a positive test with a PCR or a culture, you really don’t need serology.”

Of course, there are some limitations for both viral culture and PCR. The latter, while highly sensitive, can be expensive and may not be easily available in all areas. With viral culture, accuracy is dependent upon timing. The best samples come from lesions that have not started to scab or crust over. Wait until the lesion has begun to heal, and the result may be a false negative. For those with recurrent lesions, one option offered by some specialty clinics is to take a swab test kit home and gather a sample yourself at the beginning of any symptoms. PCR, if available, is more sensitive than viral culture and transport conditions are not as critical for the accuracy of the test.  So PCR is the preferred test for recurrent lesions, whether sampled by the patient or the clinician.

So while a patient experiencing typical lesions is a clear scenario for a PCR or culture test, many experience recurrent, less recognizable signs and symptoms. For these symptomatic patients, serology might be the answer. “I do feel that there is a clear role for serology to play in the person who has recurrent, troubling symptoms,” says Dr. Morrow. “If you’re having itching or pain, or some kind of non-specific symptoms, I do think that serology can be very helpful in that scenario, since a positive culture may be difficult to obtain.”

But what about those without symptoms, who may have other reasons for getting tested? For those people, Dr. Morrow notes, “My first question is, are you clear on why you are getting this test? If you’re asymptomatic, and in a long-term monogamous partnership, why are you interested in herpes and should your partner be involved in this testing? If you have a new partner who wants to know your status, that’s legitimate. I think that both partners should be tested in that case.”

When these partners go in for a test, it is quite likely that they will be tested with one of the two most widely used tests available–the Focus ELISA (trade name HerpeSelect®) or the Trinity ELISA (trade name Captia™). These tests detect and measure IgG (Immunoglobulin G) antibodies and provide an index value–a number that is read to be positive or negative. But it often isn’t that simple.

“In general,” Dr. Morrow explains, “the more antibody you have the higher the index value.” Yet while this concept is relatively straightforward, the index number can cause a good deal of confusion. “People use the index value incorrectly in a couple of ways,” Morrow explains. “One is that they infer that a low index value means that infection has occurred recently. That’s not always true. We’ve shown that people with long term infections can have low index values.”

Just as there is no association between index values and the time and length of infection, neither is there an association between this value and recurrences. As Dr. Morrow states, “The second thing that people try to take out of index values is that a high index value means that I’m going to recur a lot. Or some people draw the opposite conclusion and think, ‘I have a high index value, therefore I have lots of antibody and I’m not going to recur very often.’ That’s not necessarily true either. Index values are not predictive of your natural history.”

The function of the index value is simply to indicate whether the test is positive or negative. “Index values are really only to tell whether you have detectable antibody or you don’t have detectable antibody. which leads to the third category of concern with index values, and that is, how high can it be before I can be completely confident that the test is really, truly positive. That’s the big question that people have.”

Stuck in the middle
Certain values are fairly clear cut, according to Dr. Morrow. “If you get an ELISA and an index value is reported to be over about 5 or under 0.9, you should believe the result.” Where questions come are with values in a low positive range. In this range, Dr. Morrow notes, there is some possibility for false negative as well as false positive results. While an index value that falls in this middle range is reported as a positive, and is indicated as such by test manufacturers, experience has shown there can be some room for question. As Dr, Morrow notes, “There’s some overlap, what lab people call ‘the gray zone,’ where there can be some uncertainty. With negatives, if enough time has passed from a possible infection to testing, we’re in good shape. With the higher positives, we’re in good shape. It’s the mid-range or gray zone that can give you problems.”

For those that have an index value that falls in a low positive range, between 0.9 and about 3.5, repeat or confirmatory testing is a reasonable option. Dr. Morrow summarizes the strategy she gives to people: “If, given all of your clinical and sexual history, and clinical presentation, you have reason to doubt a low positive test, your options include getting a confirmatory test.” For those looking for confirmation, there are three reasonably available and moderately expensive options that have data behind them to show they are useful: the Western Blot, Biokit Rapid assay, and the Focus recombinant inhibition HSV-2 ELISA (from Quest).

While confirmatory testing can clarify initially inconclusive results, Dr. Morrow cautions that the majority in the middle range are not falsely positive. “It’s good to remind people that most people who test in the gray zone confirm as positive.”

Another issue for people to consider is that of time. While some people will develop enough antibodies to be detected by a serologic test within a few weeks, others may take a few months. For those who have an inconclusive result, a repeat test in a month or two might provide a more clear answer. If the repeat test yields a positive result, it doesn’t necessarily indicate that the initial result was incorrect. As Dr. Morrow explains, “The values less than 0.9 are really quite accurate in those tests. If you come up with a negative, you really don’t have to re-test unless you have reason to feel you may have been recently infected. If you were recently infected, you may not have enough antibodies to show at that point.”

 

Curry for a Cold Sore?

Print PDF

Research on the antiviral effects of curcumin

When you feel an outbreak of oral herpes coming on, you’re more likely to head to the medicine cabinet than the kitchen cabinet. Yet new research from the Van Andel Institute (VAI), an independent biomedical research organization in Grand Rapids, Michigan, suggests that the latter may be the source of a possible future treatment.

Researchers have studied curcumin, a component of the spice tumeric, for its antioxidant, antibacterial and anti-inflammatory effects, and believe it may have potential for treating conditions ranging from Alzheimer’s to colitis to cancer. The VAI study examined curcumin’s antiviral effects against HSV-1.

Results of the study, published in the April issue of Virology, demonstrate that cells treated with curcumin were less likely to support HSV-1 infection and replication. While curcumin didn’t stop the herpes virus from entering and infecting the cells, it appeared to interfere with the process by which the virus utilizes the cell to replicate.

When a herpes virus (or other virus) enters a cell, there is a cascade of events that occur to allow the virus to take over the cell. At one stage, what are termed early-intermediate genes are required to reproduce or replicate the virus and then destroy the cell. In a process not fully understood, curcumin appears to interfere with the expression of these early-intermediate genes.

While curcumin did demonstrate an antiviral effect, the mechanism by which it did so was not what the researchers expected. Nevertheless, the study helped further the understanding of the potential of curcumin and will help inform future research. As Steven J. Triezenberg, Dean of the Graduate School at VAI commented, “Our recent publication tested a particular hypothesis about the mechanism whereby curcumin might inhibit herpes infections.  As it turned out, the experiments suggest that our hypothesis was likely to be incorrect. So our work has moved into other questions about the genes of the virus are expressed in the host cell.”

While much work remains to fully understand how curcumin may work, its development potential is evident. “I think that curcumin, once fully developed, might be a suitable topical treatment for initial infections or recurrences,” says Dr. Triezenberg. “I expect that curcumin might reduce the length or severity of a cold sore or lesion. I do not expect that curcumin will be effective as a systemic drug, either to prevent initial infections nor to reduce the frequency of recurrences.”

As for curcumin and HSV-2, the more common cause of genital herpes, Dr. Triezenberg notes, “We used HSV-1 in our experiments because we know the details of this virus and its interactions with the cell much better. I expect that curcumin will be similarly effective against HSV-2. But we have no direct experimental evidence (yet) to support that expectation.”

 

Viral Shedding and Long-term infection

Print PDF

Study shows shedding continues decades into infection

While previous research has shown that those newly infected with genital HSV-2 have high rates of viral shedding, there is little data on shedding rates years, or even decades, into infection. New research presented at the 48th Annual Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC)/Infectious Diseases Society of America (IDSA) in October demonstrated that patients with a long-standing genital HSV-2 infection, characterized as at least 10 years, continued to have high rates of viral shedding.

The eighty-nine participants enrolled in this study collected daily genital swabs for a median of 60 days, which researchers tested for the presence of HSV-2 DNA. More than 5000 swabs were analyzed overall. The duration of infection for participants ranged between 10 and 36 years, with the median being 19 years.

The results demonstrated that individuals with decades long infection do continue to shed virus, both with and without signs and symptoms present. Seventy-four percent of the participants had detectable HSV at least once during the course the study. The mean viral shedding rate was 13.8 percent of days. HSV was detected on 64 percent of days where lesions were present 9.4 percent of days with no lesions.

With high rates of viral shedding (including asymptomatic shedding) continuing years into infection, the risk of transmission to an uninfected partner continues. Those with long-term infection, though, are familiar with all the steps that can be taken to reduce this risk: avoiding sexual contact during an active outbreak, using condoms for sexual contact between outbreaks, and daily suppressive antiviral therapy.

 

The Past and Future of a “Herpes Identity”

Print PDF

James Stanley Miller is a graduate of Harvard University. He completed an honors degree in History and Science. Mr. Miller’s honor thesis “Defining Herpes: Pharmaceutical Companies, Physicians, and Patients in the Post-Antiviral Era” examined how pharmaceutical companies, media, and patients assisted in shaping views of the infection. For our anniversary issue, Mr. Miller graciously agreed to provide us with a synopsis of his research that may be of interest to our readers.

Herpes’ identity as a stigmatized disease did not originate in the 1980s, in fact this association was a gradual process. In 1976, one journalist had already termed genital herpes the “fastest-spreading venereal disease in the world,” while Harry Nelson, the Los Angeles Times medical writer, began referring to HSV-2 as the “virus of love,”apparently a common practice at the time.1

In 1978, another Times headline declared genital herpes the “Venereal Disease of New Morality” and a “Sexual Sore Spot That’s Spreading.” The article went on to describe the disease “roaring through parts of Orange County like an unwanted dinner guest,” and emphasized its severity by describing two patients suffering significantly due to herpes, both requiring hospitalization.2

The increasing stigma and psychosocial burden associated with genital herpes in the late 1970s and early 1980s prompted the creation of support groups, herpes dating services, and herpes social groups. In 1979, The American Social Health Association (ASHA) established a Herpes Resource Center (HRC) and a large network of support groups. The HRC operated a herpes hotline and published The Helper, a newsletter for HELP members (HELP refers to both the national organization and the local support groups; HELP is an acronym for “Herpetics Engaged in Living Productively” ).3 Thus, ASHA served multiple roles–information source for individuals and the support groups with herpes and as a voice in the public sphere for people with herpes.

Both the national HELP program and individual support group moderators explicitly positioned themselves in opposition to the efforts of the media to define herpes as a dreadful and isolating disease. However, the potential for herpes support groups and social groups to widen the separation between people with herpes and “normal society” proved problematic–even as they worked to fight this definition of disease and its pernicious effects on people with herpes, they ran the risk of creating a social out-group and thus reinforcing existing stigma.

From the outset, the HRC encountered a great deal of concern about genital herpes—in its first few months of existence, before its support groups or newsletter were in operation, it received 25,000 inquires, and a few months later, when Ann Landers mentioned ASHA in a column it received another 22,000 inquiries.4 At first, HELP staff members coordinated the local chapters of HELP; as they became more established, volunteer organizers took over, but the groups remained affiliated with and accredited by the national HELP staff.5 HELP aimed to provide both education and a respite from stigma, as well as advocacy on behalf of those with genital herpes.

Since its founding, HELP/HRC staff and local support group moderators have sought to counteract media portrayals and redefine the disease for their members. In 1980, during the height of herpes stigma, a front-page article in The Helper offered advice to readers on how to tell a partner, emphasizing that they should not be guided by media portrayals in this conversation, and should in fact be prepared to contradict common assumptions propagated by the media. The article stressed that one should “NEVER use the world incurable,” nor such words as “nightmare, malignant, herpetic, lesion, or venereal.” HELP staff also discussed the controllability of herpes, saying, “DON’T forget to emphasize how preventable herpes is…let’s not be guilty of focusing on so narrow a slice of the entire issue that we distort it.” Finally, the article declared that, contrary to media portrayals, herpes was not an all-consuming, self-defining disease: “ALWAYS keep in mind that herpes…is only one small part of who and what you are (i.e., you are not a virus).”6

Similarly, readers wrote in to challenge the idea of herpes as an all-encompassing physical and personal defect. As one support group coordinator put it, “herpes is not good or bad. It is. I have herpes. It is unfortunate that I have herpes. It is also unfortunate that I have poor vision, bad knees, and a car with 90,000 miles on it.”7 One support group member expressed that the group had allowed him to move beyond the idea that herpes dominated his life and his identity: “The group made me feel less unique. It put things into perspective. It helped make me feel that I’m not a herpie–I’m a Tom.”8

However, the relationship between support groups and this “herpes identity” referred to by the member above has proved complex. While many people with herpes found (and continue to find) support groups essential in escaping from the stigma of herpes, others have suggested that these groups inadvertently contributed to the stigma by creating a separate group, and group identity, apart from society. Historian Allan Brandt has critiqued ASHA for the choice of the HELP acronym, arguing, “first, the whole notion of a noun which identifies the infected individual by the disease itself–herpetic–contributes to the stigma the infection carries…the patient is the disease. Second, the notion of ‘Living Productively’ reinforces the stigma; why would there be any assumption to the contrary, if not for the prevailing views of these individuals and their morality.”9

Though reaching somewhat different conclusions than Brandt, ASHA has also confronted this issue by declining to endorse herpes dating services and maintaining a strict separation from herpes dating groups. They argued that “it’s vital to stress to those newly infected that a person with HSV need not be paired with someone else who carries the virus. Rather, those of us with HSV infections should be developing the skills and resources to make our lives full and satisfying and to overcome gracefully whatever remains of society’s prejudices on the subject.”10

The Internet greatly expanded the possibilities for these groups, making it far easier to organize and publicize herpes support groups and herpes dating services. However, this success renewed concerns about contributing to the stigma of the disease or creating a social out-group. Gayla McCord, founder of the Southern Indiana HELP group, stressed that “socializing with people who have genital herpes is one step in the healing process. But remember, having an STD doesn’t define you as a person…if you put yourself only on STD dating sites, you’re restricting yourself to 25 percent of the population.”11 A popular herpes dating site, MPwH (Meet People with Herpes), however, pins the responsibility not on the person with herpes but on an uncaring and moralizing public: “Herpes and HPV don’t define you, but judgmental people will make judgmental decisions. Here, you don’t need to be judged due to something you can’t control.”12

Since Brandt’s writing, the term “herpetic” has fallen out of favor, but the labeling of people with herpes has not disappeared. One term that had replaced it is a simple “H”—a construction used by a number of “H dating” sites such as CharlotteH.com and AtlantaHClub.com, as well as in a recent issue of The Helper.13 People with herpes who use non-herpes dating sites also have the option of putting the digits 437737 (the telephone keypad spelling of herpes) in their listing, as a sort of secret code to alert other people with herpes who happen to browse their listing or who search for 437737 on the site.14 These naming constructions would perhaps be even more objectionable to Brandt—not only do they give a label to people with herpes, but they also portray herpes as a disease that is, or should be, hidden by making it an unspeakable word.

The “H” label can be viewed as either an echo of the Scarlet H and a refusal to utter the word herpes or as a reclaiming and redeployment of a stigmatizing term (something akin to the reclaiming of “queer” in the gay community). Such practices resist simple characterization—while both these naming constructs and the need for herpes dating sites certainly represent a symptom of continued stigma, the “H” label is often used in a lighthearted way, complicating its portrayal as an internalization of stigma.

This question of a “herpes identity,” as well as the role of support groups in both creating and destabilizing the concept, resists simple characterization. ASHA’s tireless efforts have provided indubitable benefits to thousands of individuals living with herpes, and the support group model has been established as a central part of disease management. Yet, after 30 years of HELP groups, concerns about the unintended consequences of support groups remain worth considering. Though I do not presume to offer any sort of resolution to this issue here, it is my hope that this research will encourage readers to consider how they might reconceptualize this idea of a “herpes identity.”


1. George Getze, “Experimental VD Drug Being Tested,” Los Angeles Times, March 28, 1976; Harry Nelson, “Cure for ‘Virus of Love’ Still Eludes Researchers,” Los Angeles Times, March 7, 1977.
2. Anne LaRiviere, “‘Venereal Disease of the New Morality:’ Sexual Sore Spot That’s Spreading,” Los Angeles Times, January 19, 1978.
3. The Helper 1, no. 1 (July 1979). Daniel Laskin, Health Section, New York Times, February 21, 1982; Terry Box, “Herpes Sufferers Fight the Stigma,” Los Angeles Times, December 21, 1982.
4. All About HELP,” The Helper 1, no. 1 (July 1979); Dr. Stanley M. Bierman, “Reflections on the Management of Patients with Genital Herpes Simplex,” The Helper 1, no. 3 (December 1979).
5. “Other Local HELP Groups,” The Helper 1, no. 3 (December 1979).
6. “How, Where, When and What…to tell a sexual partner about genital herpes,” The Helper II, no. 2 (June 1980).
7. Joan Markham, Chairperson, HELP Philadelphia, “Point of View,” The Helper IX, no. 2 (Summer 1987).
8. Daniel Laskin, Health Section, New York Times, February 21, 1982.
9. Brandt, Allan M. No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880. Expanded. New York: Oxford University Press, 1987. 181.
10. The Helper X, no. 4 (Winter 1988). They reiterated this position 2000. The Helper XXI, no. 4 (Winter 2000).
11. American Social Health Association, “Herpes Online: Exploring the ‘H’ Community,” The Helper, issue 17 no. 1, spring 2005.
12. Antopia’s MPwH, http://www.mpwh.com/
13. Herpes Online, “Herpes Dating Guide,” http://www.herpesonline.org/herpes_dating_guide.html; Elizabeth Cohen, “Rising STD Rate Sparks Online Dating Sites,” http://www.cnn.com/2007/HEALTH/conditions/02/27/std.internet/, CNN.com, posted March 12, 2007, ; “A Novel Way to Meetup with Others,” The Helper XXXI, no. 2 (Summer 2008).
14. Herpes Online, “Herpes Dating Guide,” http://www.herpesonline.org/herpes_dating_guide.html

 

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 129

Warning: Illegal string offset 'active' in /var/www/html/www.thehelpernewsletter.org/templates/ja_purity/html/pagination.php on line 135
  • «
  •  Start 
  •  Prev 
  •  1 
  •  2 
  •  3 
  •  4 
  •  5 
  •  6 
  •  7 
  •  8 
  •  9 
  •  10 
  •  Next 
  •  End 
  • »


Page 1 of 41

Get Managing Herpes on Kindle today! ASHA's award winning book Managing Herpes: Living & Loving with HSV, by Charles Ebel and Anna Wald, M.D., M.P.H., is an essential resource for anyone looking for more information on herpes.


Only $7.95 for the Kindle edition.