Above is a sneak peek at one page of the forthcoming Rational Vaccines (RVx) website. I am hopeful that this will launch in August 2016. To give this blog post some context, I copy-and-paste from the Mission Page of the website, as follows:
“Our mission is to solve all aspects of the herpes problem, which afflicts millions of people and too often leaves sufferers isolated and hopeless. RVx’s vision is that a complete solution to the herpes problem will involve (1) replacement of misinformation with accurate information about the disease, (2) better herpes diagnostic testing that is accurate and reliable, and (3) effective therapeutic and preventative vaccines to eventually eliminate herpes as has been done with polio and chickenpox.
The current standard of medical care for herpes is inadequate. More than four billion people around the globe are infected with herpes simplex virus serotype 1 (HSV-1) and/or herpes simplex virus serotype 2 (HSV-2), and every week another million people are newly infected. HSV-1 is the leading cause of infectious blindness in developed countries. Genital herpes increases the likelihood of the contraction of HIV by up to three-fold, which exacerbates the spread of AIDS. Because of these and other complications, the World Health Organization has called for improved methods of treatment and prevention of herpes.
RVx believes that by taking a different approach to the problem, we can assist in this fight, and help health groups and doctors stop the spread of all forms of herpetic disease. Through the development of rationally-engineered live viral vaccines and a new diagnostic test, RVx is forging the path ahead to a brighter future.”
With this introduction to RVx, I am in this post putting out a call to herpes sufferers and/or medical professionals who wish to contribute to one critical aspect of RVx’s mission; namely, improving upon the information patients receive when it comes to the diagnosis and management of herpes infections.
While sufferers are very focused upon finding “a cure” for herpes, the implementation of effective HSV-1 or HSV-2 vaccines is only, in my opinion, one part of the larger problem. I believe that there is a very pressing need to (1) improve upon the accuracy of information provided to doctors about herpes; (2) improve upon the proper diagnosis of HSV-1 versus HSV-2 infections; and (3) provide concise and simple information to newly diagnosed patients so that they may understand what is happening in their bodies and develop a positive, but realistic, plan for how they may choose to manage their herpes and the many implications that come with the diagnosis.
In particular, I find that the level of misinformation circulating among both patients and doctors is staggering and is, in and of itself, a huge part of the problem that RVx will be seeking to tackle. If you analyze the headers at the top of the web page shown above, the fourth pull-down menu will be for “Accurate Info,” and I offer below a draft iteration of what the banner on that page will look like for the purposes of clarifying the nature of my inquiry / call for help from herpes sufferers in this blog post.
So, I arrive at my question for herpes sufferers or doctors who treat the condition.
What would you suggest are some of the issues you feel are most pressing that often get lost, confused, or wrong when doctors are helping their patients develop a plan-of-attack for dealing with this life-long / persistent infection?
The reason for the banner above is that I believe the level of knowledge I hear from most doctors with whom I have discussed herpes, or the treatment thereof, seems to be woefully outdated. Generally, the average medical practitioner’s knowledge of herpetic disease reflects the same common-sense / partial understanding of herpes I heard taught to medical students when I first enrolled in graduate school in 1992. This is pretty shocking considering that at least 100 million people worldwide and at least 5 million in the U.S. are affected by some aspect of recurrent herpetic disease (i.e., American doctors learn as much about malaria, but will interact with at least 1,000-fold fewer malaria patients).
The actual science I have seen transpire in the past 24 years has not in any substantial way changed how herpes is treated, and this is the fault of scientists in my field for spending too much time in their ivory towers and not enough time in the trenches with patients or doctors to have any clue about the actual, physical reality of how poor herpes patient management is relative to the level of scientific understanding we possess. That is, I am not suggesting that there exists a minor gap that separates (1) the current standard of medical care for herpes from (2) what is possible using the knowledge and tools we currently possess. I am suggesting that it is a friggin’ chasm that separates the two, and doctors are working with horribly outdated information. Shame on scientists in my field for not being more proactive in addressing this critical issue, but at this point attention should be focused solely upon doing better moving forward.
The majority of my fellow herpesvirologists are so busy investigating the potential functions of herpesvirus proteins or microRNAs (i.e., too busy being science geeks) to have any time left to consider the clinical aspects of the herpetic diseases that afflict 100 million people worldwide. So, I have largely written off most of the scientists in this group as a likely source of answers for actually solving the herpes epidemic.
To the other 99.9% of the world who think about other people and solving real-world problems, I repeat that a major part of RVx’s Mission is to improve the status of knowledge readily available to doctors and patients in the form of brief, bullet point need-to-know facts that will be valuable to (1) newly diagnosed herpes patients and (2) the medical professionals who are responsible for their recovery and future treatment. In addition, I envision RVx’s Accurate Info page containing a more comprehensive list of Frequently Asked Questions on this topic to try and replace “folklore and misinformation” with “Accurate Information” that reflects the current status of knowledge.
So, herpes sufferers, this is your opportunity to chime in via comments on the blog (preferably constructive comments) on issues and questions that RVx may miss in our first pass at this portion of the website.
I offer below some of my own thoughts on the matter, but on behalf of RVx, I am calling out to those in the trenches to help this company revise the outdated narrative / mental script that most medical professionals have been provided as their “How To Guide” for advising patients on how to navigate herpes. Call me an idealist but, as crazy as this is, I do believe that scientists should provide doctors with a synopsis of what we actually know about herpetic disease in 2016 such that we empower medical professionals to better advise their patients. The vast majority of medical professionals sincerely want to serve their patients to the best of their ability, but that can only happen if doctors and nurses are provided with a synopsis of herpes that is aligned with what patients actually experience.
– Bill H.
My shorthand notes on some of the Accurate Info that would benefit doctors.
1. Doctors, imagine if YOUR daughter or mother had herpes and was in a deep depression because she was scared of interacting with anyone and transmitting the infection. Now imagine how well it would go when you talked to your daughter or mother and insinuated that she was just being a whiner because “It is just a skin disease.” Please do not disrespect your patients by suggesting this to your patients as it reveals both (1) a stunning level of ignorance about the psychosocial implications of herpetic disease and (2) an utter lack of empathy for the emotional suffering of others.
2. Valtrex is not the end-all, be-all cure, so do not just write a prescription for valtrex and walk away from your patients assuming they will be fine. Valtrex (and famvir, acyclovir, and pencicolovir) is a poorly absorbed and not terribly soluble drug with limited bioavailability. It may be adequate for some patients, and some patients may just mount a natural immune response that controls a HSV-1 or HSV-2 infection. However, for the 2% of HSV-infected patients who experience high level recurrent herpetic disease, (1) their herpes symptoms may have serious complications like chronic nerve pain that exacerbate the feelings of isolation, depression, and hopelessness and (2) valtrex may not be adequate to prevent these symptoms.
3. Take some time to actually learn more about the disease. RVx will make every effort to consolidate useful and accurate info on our website. Please take the time to at least consider the 2-page bullet point synopsis of what you need to know.
4. It is important to accurately diagnose HSV-1 versus HSV-2 infection, particularly in the case of genital herpes in order to give people the opportunity to establish relationships with others who carry the same virus. Over 50% of people have HSV-1. Thus, individuals with HSV-1 genital herpes have an exceedingly high chance of meeting a future partner who has an asymptomatic HSV-1 infection. People who are HSV-1 asymptomatic (i.e., frankly HSV-1 seropositive) have a far lower risk of contracting HSV-1 genital herpes from an intimate relationship with a person who suffers from recurrent genital herpes caused by HSV-1.
5. Just because it is below the belt does not mean it is HSV-2!! Nearly one-half of genital herpes cases are caused by HSV-1 and in some pockets of the world, the frequency of HSV-1 genital herpes can exceed the frequency of HSV-2 genital herpes.
6. Both HSV-1 and HSV-2 can cause recurrent genital herpes! It is an unproven, but exceedingly common misconception among doctors that primary HSV-1 genital herpes never progresses to recurrent genital herpes. This is not true. At issue is the fact that the majority of medical professionals either do not test for, or order unreliable tests, to make a HSV-type-specific diagnosis. Hence, medical professionals often assume that recurrent genital herpes is only caused by HSV-2, but the empirical data do not support this premise.
7. Every medical professional knows that when the alpha-herpesvirus that is called varicella-zoster virus (VZV) reactivates from latency in the spinal ganglia, this can progress to an exceedingly painful condition that is associated with visible lesions on the skin and which is commonly referred to as “shingles.” If doctors were properly educated about herpes simplex virus 1 and 2 (HSV-1 and HSV-2), they would all know [in the front of their minds] that these are both alpha-herpesviruses that (1) share 60 genes in common with VZV, (2) establish life-long infections in neurons like VZV, and (3) when HSV-1 and HSV-2 reactivate from latency they can cause lesions on the skin and AN EXCEEDINGLY HIGH LEVEL OF PAIN, just like shingles caused by VZV. Not every herpes patient experiences high-level neuralgia, but some do, and for some it is a DAILY EVENT that can last for years to decades. So, please don’t tell your herpes patients they cannot have chronic pain associated with their recurrent herpes. They can, and some of them do. When a latent alpha-herpesvirus reactivates in the trigeminal or spinal ganglia, the inflammatory response in the ganglia intensifies and may cause neuronal misfiring of the sensory pain and pressure fibers that alpha-herpesviruses often infect. Misfiring of pain fibers……hmmm……what would that do? Probably, it would cause pain. There is a robust literature that is now 20 years old documenting that chronic inflammation of T cells and other WBCs is seen in HSV-1-latently infected ganglia, and those WBCs are seen (in tissue sections) intensely encircling individual HSV-infected neurons. This is not a hypothesis, but is a well documented fact in both mice and men. So, just like shingles patients experience high level pain that needs to be considered and/or treated by their doctors, so too, the same is true with a subset of herpes patients.
8. It is time to raise the bar on medical professionals’ average understanding of herpes! For God’s sake, if you are going to advise patients on the disease they have, then it is time to update medical textbooks with the information that scientists have been gathering about herpes latency for the past 20 years. For those of you so inclined, you may click on the following link to learn more about the in vivo biology of herpes simplex virus, which I find to be poorly (incompletely) described in current medical textbooks. I believe that RVx’s website will be a resource for doctors and patients to find a more succinct and pragmatic summary of the high points that everyone should know about herpes so that we may begin replacing “misinformation” with “Accurate Information.”