Can we advocate for a Herpes cure and reduce its stigma at the same time? It’s a strange dichotomy for many HSV carriers desperate for a cure. Advocacy by its nature needs to elevate the critical elements of an issue which are misunderstood, under appreciated or viewed differently by those in power. The late John Lewis called this making “good trouble.”
For example, most people won’t know Herpes has mounting evidence of serious health complications including Alzheimer’s, or is a driver of the HIV epidemic. To create urgency, as if genital lesions in 40-80 million symptomatic genital herpes carriers isn’t enough, us advocates need to elevate the burden of this disease. But by creating urgency for a cure, do we make the stigma worse?
There is another school of thought around Herpes, a camp whose main objective is stigma reduction. This group pushes acceptance that the virus is a reality, it’s not going away, it’s common, and let’s learn to live with it. Ella Dawson, a writer and sex critic well known in Herpes positive communities, is in this camp. Janelle Pierce of The STI Project also participates in the “let’s live with it, accept it and move on,” camp.
Often, even those on the front lines of women’s and sexual health, the same folks who deal out positive diagnosis and Valtrex every day, subscribe to this narrative. Herpes is really no big deal. It’s ubiquitous in the population. Take this Valtrex for the rest of your life, you’ll be fine, it’s manageable. The worst part of the condition is the stigma. Any questions?
We do have questions. Why isn’t there a cure for Herpes Simplex already? Valtrex, Aciclovir, etc. were invented 40 years ago. It is the largest major STI with no effective treatment, vaccine or cure, it causes painful recurrent lesions on your mouth and/or genitals and has mounting evidence of other serious health conditions. So what gives? Why the minimization of Herpes?
While one school of thought fights stigma only, many in the HSV research have been quietly looking for a cure for 30 years. World-renowned field experts Drs. Larry Corey and Anna Wald (among others) agree Herpes needs to be prioritized urgently and that it’s burden of disease is under appreciated. The NIH acknowledges it is a difficult and frustrating problem where we need new ideas.
In a recent dialogue among Herpes advocates, a medical assistant from Planned Parenthood insisted that “Herpes is just not a big deal.” This MA opined that Herpes Simplex Virus is not an urgent public health problem, it’s common and “most people are asymptomatic”. It’s a response that minimizes the impacts, in an effort to reduce anxiety for newly diagnosed patients or to calm down Herpes carriers asking too many questions.
Let’s apply this “it’s no biggie” rationale to drunk driving. Most people who drive cars don’t get into car accidents. That doesn’t change the fact that a small subset do, may be seriously injured or killed, and this risk is sufficient enough to make drunk driving illegal.
Those who pose a risk, drunk drivers, hopefully, take precautions to keep the rest of the population safe. Or they can go to jail. Makes sense. We don’t say, “well, most people who drive cars get home safely,” and conclude that drunk driving is not a problem.
Saying most people will never have an outbreak is gaslighting. 85% of the 6 billion people globally with HSV are asymptomatic and unaware of their status. That still leaves 40-80 million globally who have symptomatic genital herpes meaning regular, recurrent genital lesions. Imagine this is your brother or best friend. Herpes is common, yes, and still an urgent public health issue, even when only considering the millions of symptomatic individuals.
If one has oral or genital lesions, or any number of other associated health conditions, it’s really irrelevant whether other carriers are asymptomatic or not.
What is relevant is that, similar to Covid-19, Herpes spreads primarily asymptomatically. 85% of spread is from asymptomatic people unaware of their status. Shouldn’t these asymptomatic carriers have a responsibility to protect the virus’ spread to the rest of the population? In regards to Covid-19, we implemented safety protocols for the entire community to protect the most vulnerable. Why is this rationale not applied to Herpes Simplex Virus? Because people aren’t dying?
Current antiviral medications do not cure the virus, they only reduce symptoms by about half, and for some carriers, don’t work at all. So while symptoms are manageable for most, the infection still lives in the body, within the nerves and central nervous system. So, this may be news to some, but Herpes is not benign. The presence of the chronic infection, beyond the acute symptoms of oral and/or genital lesions, is increasingly proving to have a number of serious health complications worthy of further study.
The “acceptance” camp tries to reassure HSV carriers, its no big deal, it’s so common. Since when did high prevalence equal ambivalence? Unless you are so disillusioned to think Herpes is too big a problem to solve, or that it is just a minor skin condition not worth solving?
Many in this camp say the stigma is the worst part of the infection. Perhaps it is minimized because they don’t have the answer for, “why isn’t there a cure for this?” Perhaps clinicians don’t have time or energy to dole out tissues for the tearful newly diagnosed, those struggling with symptoms, and it is easier to encourage patients to go ahead and move on than to rail against? How many of us are asking the hard questions? How many on the front lines would be brave enough to attempt to unravel what is a massive, complex public health issue at the intersection of biotechnology, systemic racism, a broken healthcare system, capitalism, and misogyny?
Not many. Although we’re hoping to find a few brave souls.
Yes, the stigma is crippling. Herpes is the most heavily stigmatized STI, or possibly any medical condition, period. But the impacts of infection itself can also be damaging and are indeed reason enough to prioritize a cure.
Is it possible to advocate for a cure, and to stop the stigma at the same time? Of course. These ideas aren’t mutually exclusive. Ultimately, a cure would help reduce stigma and suffering. And to advocate for both we can simply say, “this virus requires a cure urgently, let’s stop minimizing the burden of disease, and also, I’m a human being worthy of curing.”