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How the Stigma of Herpes Harms Patients and Stymies Research for a Cure

May 25, 2023
by Isabella Backman

“Well, my life is over,” Christopher Pickering remembers thinking.

It was the height of the COVID-19 pandemic when he first noticed the painful urination, swollen lymph nodes, over 20 blisters in his pubic area, and a dull, aching, burning pain. “This isn’t anything, it’s just a friction burn,” he assured himself, trying to suppress his gut feeling on what the blisters actually meant. “I can’t be the kind of person who gets [herpes].” Because COVID had shut down all the sexual health clinics in Toronto, he found himself wandering into a busy walk-in clinic. The doctor confirmed his symptoms were likely herpes, swabbed one of the blisters, and quickly sent him away with a prescription to help him get through his first outbreak.

On the bus ride home, antivirals in hand, Pickering processed his new reality. Now a patient advocate on TikTok, he speaks openly to his over 100,000 followers about his diagnosis and journey to acceptance. But in that moment, he thought, “no one is going to accept me.”

Herpes simplex virus 1 and 2 [HSV-1 and HSV-2] infections are exceedingly common. As many as half to 60 percent of adults in United States have oral herpes, caused by HSV-1, and one of six individuals lives with genital herpes, caused by either HSV-1 or HSV-2. Despite this, the effects of the stigmatization of herpes are pervasive. Upon diagnosis, many patients have found that their providers aren’t well-informed about the condition, which got wide public attention in the 1970s and 80s that receded when deadly HIV/AIDS took hold.

The attention faded, but the virus didn’t. Patients who are infected often go on to experience severe mental health impacts in addition to the physical symptoms, but fear of stigmatization keeps many from advocating for themselves. Furthermore, the lack of funding can stymie research that could be life-changing for the millions living with the condition. As the COVID-19 pandemic and prevalence of long COVID highlight the urgent need to better understand the long-lasting impacts of viral infections, researchers and patients alike hope it will also generate interest in other chronic viral illnesses like herpes.

“Herpes can be a devastating disease. But because it’s sexually transmitted, people don’t want to talk about it,” says Akiko Iwasaki, PhD, Sterling Professor of Immunobiology and professor of dermatology; of molecular, cellular & developmental biology; and of epidemiology (microbial diseases). In her lab at Yale School of Medicine, Iwasaki has developed a therapeutic vaccine that can successfully shut down the reactivation of genital herpes in guinea pigs, but lack of investment has hindered it from progressing to human trials. “People used to email me all the time asking when a vaccine would be available, saying their lives had been destroyed by the virus. But without interest from pharmaceutical companies, we can’t go any farther.”

The Psychosocial Impact of Genital Herpes

Sexually transmitted infections are surging nationwide. Between 2017 and 2021, the Centers for Disease Control and Prevention (CDC) reported that cases of gonorrhea increased by 28 percent, and syphilis by 74 percent. Less testing and education during the height of the COVID-19 pandemic, says Dana Dunne, MD, MHS, associate professor of medicine (infectious diseases), contributed largely to this surge. “Our ability to test and treat sexually transmitted infections really shut down between 2020 and 2021,” she says. “So now that we’re able to test more frequently again, we’re seeing a lot more cases because of the ongoing, unchecked transmission when we were unable to intervene.”

However, the 2021 report has a notable omission—herpes. Due to its difficulty to track and a lack of accurate testing, the CDC doesn’t recommend that the infection be included in standard sexually transmitted infection panels. But chronic viral infection, especially HSV-2, can significantly impact a patient’s quality of life.

People used to email me all the time asking when a vaccine would be available, saying their lives had been destroyed by the virus. But without interest from pharmaceutical companies, we can’t go any farther.

Akiko Iwasaki, PhD

When people acquire herpes, the virus stays mostly asleep in the body for the rest of their lives, emerging just from time to time. Most people living with herpes—as many as 90 percent of them—either are asymptomatic or have symptoms so subtle they don’t realize they are infected. In symptomatic cases, HSV-1 is associated with cold sores, and while it can be transmitted through kissing, it also can be passed through more informal kinds of contact such as sharing cups. HSV-2, on the other hand, causes genital sores and is typically acquired through sexual contact. However, both HSV-1 and HSV-2 can cross anatomic sites—individuals can get HSV-1 on their genitals, and more rarely, HSV-2 in their mouths.

Despite their similarities, HSV-1 and HSV-2 have vastly different psychosocial implications, says Dunne. While there isn’t much perceived stigma around getting a cold sore, she explains, people with HSV-2 often face fear and uncertainty about how to disclose their status to their partners. “They feel like they’re branded with a letter H on their forehead,” she says. This can make patients reluctant to get tested for it and physicians conflicted on when to test.

“The most significant challenge of living with herpes by far—and I don’t think this is covered anywhere close to what it should be in the media and scientific community—is the psychological impact,” says Brandon [name changed for privacy], a 42-year-old attorney, who has put off re-entering the dating pool after his recent divorce. “I can’t for the life of me put any energy into dating anymore because I just don’t know how to tell people about this diagnosis.”

“Living with herpes feels like a prison sentence,” says Natalie [name also changed], a nurse practitioner who sat on an ice pack during her interview to cope with the pain of one of her outbreaks, which are frequent despite taking antivirals. “You’ll have these wonderful periods of time where you have no outbreaks, but you still have this dread knowing it will come back. It’s devastating.”

Lack of Education and Effective Herpes Testing Are Barriers to Patients

Furthermore, many patients say that a lack of accurate testing and ignorance about the condition among their providers pose further challenges. There are two ways to test for the virus. For a patient with an active outbreak, clinicians can directly swab the sore and provide a highly accurate result. Asymptomatic patients can seek out a blood test, but there is significant risk of receiving a false positive. “Current testing measures are absolutely not adequate. We’ve had the same tests on the market for decades,” says Jeffrey Klausner, MD, professor of clinical population and public health sciences at Keck School of Medicine of the University of Southern California. “There just hasn’t been a push or demand for expansion of confirmatory testing.”

“I believe a lot of doctors avoid using the blood test because they don’t know how to counsel patients if it’s positive,” Dunne adds. “Physicians need to know how to counsel patients, as well as be familiar with how to recognize a true positive and false positive and how to troubleshoot the tests that are inconclusive.”

Fourteen years ago, Natalie went to two different clinics, where her symptoms were dismissed as a urinary tract infection or yeast infection. Although she was not yet a nurse practitioner, she regrets not demanding further testing, a decision that haunts her to this day. She ended up transmitting the virus to her now-husband, who was diagnosed immediately after his symptoms appeared. “I live with the shame that I am a victim and also that I became a spreader,” she says. “My husband says I am his dream woman, but that I am also his nightmare because of what I did.”

When Brandon was diagnosed after noticing a pimple-like sore on his groin ten days after protected intercourse with a new partner, he asked an internal medicine physician about how to disclose it. The doctor told him that if he didn’t have active outbreaks, he had nothing to worry about. “Conflicting advice by doctors has put a huge psychological burden on me,” he says.

The root of the widespread ignorance among providers, says Klausner, begins in part during medical school. For about 10 years, he taught a course on sexually transmitted infections at the University of California, Los Angeles, School of Medicine, where he had about 55 minutes to cover over a dozen different infections. “We don’t provide enough opportunity for education and training around sexual health in medical school,” he says. “Our society has always had a difficult time talking about sexual health, and as a result so many medical professionals are poorly trained in how to listen to and counsel patients.”

Lack of Funding Hinders Herpes Vaccine Research

For decades, scientists have tried and failed to develop vaccines for herpes. The evasive nature of the virus makes it notoriously difficult to treat. But in her lab at Yale, Iwasaki has discovered promising clues for an effective vaccination.

Conventional vaccines boost immunity by triggering antibody development. But after vaccinating mice for HSV-2 with conventional vaccines, Iwasaki’s team learned that the animals failed to develop T cells or antibodies in the genital tract. In addition, the virus displays molecules that inactivate antibodies from attacking the virus. The limited access of T cells and antibodies to the viral entry site, and the antibody evasion strategies, likely explain why previous herpes vaccines have failed.

Based on that insight, roughly a decade ago the team developed a vaccine strategy called “prime-and-pull.” Through this mechanism, the researchers used a vaccine to generate T cell immunity in guinea pigs [prime]. Then, they used a cream that can induce chemokines—signaling molecules that can direct immune cells toward an infected site—to attract the T cells into the vaginal tissue [pull].

The strategy was a success—the team found that their vaccine could shut down the reactivation of herpes in infected guinea pigs. But the lack of funding has brought their work to a halt. “We’re looking for partners to be able to take this to humans, and that’s been the bottleneck ever since,” Iwasaki says.

She believes the stigma around sexually transmitted diseases is likely one of the obstacles to getting her vaccine funded. Research shows that the human papillomavirus (HPV) vaccine Gardasil, for example, is dramatically effective in preventing cervical cancer—reducing rates in women by nearly 90 percent. But despite its benefits, convincing parents to vaccinate their children is challenging, experts say.

“We have this fabulous anti-cancer vaccine designed to wipe out cervical cancer. But parents will see that it is ‘an STD vaccine’ and think we’re accusing their son or daughter of being high-risk sexually,” says Sten Vermund, MD, PhD, Anna M.R. Lauder Professor of Public Health. “I tell them that HPV is so ubiquitous and easy to contract that most women will acquire it at some point in their life. It’s not a marker of unsafe sex, but many parents still refuse.”

A herpes vaccine may face similar resistance, making it economically unattractive for the drug industry. “When pharmaceutical companies need to pour millions of dollars into developing a vaccine, if the uptake is going to be low, the profit doesn’t justify the effort,” says Iwasaki. “This makes STD vaccines difficult, even for something so obviously beneficial, safe, and effective as Gardasil.”

As interest in mRNA vaccines grows post-COVID, Moderna and Pfizer have begun working on such a vaccine for herpes. But in a recent talk to the World Health Organization (WHO), Iwasaki warned of the limitations of mRNA vaccines in treating herpes. “If you just make a vaccine without thinking about the mucosal tissue, it’s not going to work,” she said. “Just making an intra-muscular vaccine alone—I think it will be very difficult for such a vaccine to be effective.”

Advocates for Herpes Patients Rise Above the Stigma

The COVID-19 pandemic has shed light on the highly pervasive nature of viruses. As hundreds of millions of individuals recover from a SARS-CoV-2 infection, as many as one in eight experience lingering physical, cognitive, and neurological symptoms known as long COVID. While post-viral syndromes are not new, they have long been ignored by researchers. However, the magnitude of “long haulers” became too large for the medical community to sweep under the rug.

Many viral infections have been linked to autoimmune and neurological disease. For instance, research suggests that the Epstein-Barr virus (EBV), a member of the herpes virus family that is known for causing mononucleosis, may play a role in triggering multiple sclerosis. Individuals infected with EBV are 32 times more likely to develop the disease. Research has also uncovered potential links between HSV-1 and Alzheimer’s disease—the virus has been linked to amyloid plaque-like formations in human brain-like tissue. More research will be needed to see if herpes is causing the neurodegenerative disease, says Iwasaki. But this will require more investment in studying the infection.

As patients with long COVID struggle to find answers, many have rallied to advocate awareness about the need for more research. But patients with herpes face a much greater stigma that leaves many fearful to speak up about the need for new treatments. Now, as the medical community shows a growing interest in poorly understood viruses, patients are beginning to take a stand. In 2020, Herpes Cure Advocacy, the first grassroots international advocacy organization for HSV-1 and HSV-2, was born. The organization is advocating for the National Institutes of Health (NIH) to invest more in therapeutic cure research and for the CDC to establish an HSV taskforce. “Our job is to raise awareness, try to share medically accurate information, and hold public health agencies accountable to try to change the field the best we can,” says Kimberley, a patient advocate who founded the organization. For privacy, she has asked that her last name not be included.

For Pickering, who continues to make videos about herpes on TikTok and other social media platforms, learning to question the stigma about herpes helped him become less afraid of it. “People are not judging you if you don’t judge yourself,” he says in his recent YouTube video. “The stigma might never go away in the heads of everyone else and in society, but you can realize what the stigma is about, that you don’t have to hold onto it, and that you don’t have to be impacted by someone’s harsh words because those harsh words don’t make any sense.”

And advocacy efforts are beginning to pay off. For instance, prodded by Herpes Cure Advocacy, the Office of the Assistant Secretary for Health is working on the first national strategy for the cure, treatment, and prevention of herpes.

“Public health officials have a lot of competing priorities, so if we want change, we need more voices,” says Klausner. “If we want a cure and vaccines for herpes, we need to scream and yell for them.”

Submitted by Robert Forman on May 25, 2023