The CDC's "Reasons" For Not Testing ... Straight From The Horses ... er... Asses ... Mouth :(

[WCSDancer2010]

We get inquiries here all the time about why the CDC doesn't screen for Herpes ... I figured I'd post this as an FYI.

 

http://www.cdc.gov/std/herpes/screening.htm

 

One of the excuses is they don't know if the rates of transmission will go down if people know they have it. Well DUH... given all the people who shed asymptomatically, if they had the option to take meds or at least knew they really should use condoms, don't you think that they *might* just not pass it on as much??? SMH

[seeker]

well, I remember back in the mid 80S a miracle drug from Africa that would cure drug addiction. it was some plant used by a tribe for adulthood rituals. 48 hours of tripping ala LSD and bam, no addiction. heroin, cocaine addicts had about an 90% success rate in European countries that tried it. our governments reasons for not trying it. " we aren't sure of the side affects" yep, side affects from a plant used for 1000 years. oh and exactly what are the side affects from being a heroin addict??? of course that was during Ronnie Rayguns and Nacy " my astrologer says just say no" time. you know when America started heading down the batshit crazy path we are on. science deniers, :truth" more important than FACTS. we truly live in an idiocracy.

[forgivenessandpeace]

I've come to the conclusion that we cannot count on the CDC. Nor can we count on our doctors, health care professionals, or intimate partners. When it comes to HSV, we can only count on ourselves.

[WCSDancer2010]

Well, I feel that *we* can make the change. We need to tell our Doctors when their info is wrong. We need to tell out friends that they need to get properly educated. We need to insist that the CDC change their protocol. And we here at H Opp are working on that part....

 

Just as the Gay community finally stood up and made a stand to be understood and respected, so we need to unite and create the change that is needed around Herpes testing and the stigma ;)

[CityofAngels]

I am studying to be a scientist, so I'm going to chime in here. While I don't have any unusual amount of knowledge about herpes beyond that which I've gained educating myself about all sexually-transmitted infections, I do know a thing or two about clinical studies.

 

First, let me say that I really respect what people are trying to achieve on this forum by encouraging disclosure. I think that is a worthy and inherently admirable goal, and I think everyone will be well-served by being honest.

 

The reason the CDC does not recommend disclosure is this: rigorous clinical studies have shown that being informed that one has genital herpes does not by and large change a person's behavior vis-a-vis disclosure. These studies have consistently shown that, once informed of a diagnosis of genital herpes, individuals are on average not more likely to disclose their diagnosis to either their current or future partners.

 

Since these studies concern preponderant behavior, there are of course exceptions to this rule. But the findings of the studies in question illustrate an important point: just because we think or "intuit" that a person will act a certain way due to the downward normative pressure that having herpes exerts on a person to disclose, does not thereby mean they will act in that manner. That is why we conduct clinical studies: to assess real-world behavior and quantify over a variety of variables whose influence and effects on behavior are unknown on the basis of mere speculation alone. We also conduct clinical studies for the very general reason that, by and large, our common sense understanding of the world collapses in the face of rigorous scientific scrutiny. Natural science constantly reveals the world and actual human behavior to be highly counterintuitive.

 

Policymakers have concluded that, due to the significant negative psychosocial consequences that often accompany a diagnosis of genital herpes, and the fact that knowledge of one's infection does not in general change sexual behavior or encourage disclosure, it is best not to encourage testing.

 

Now, speaking of my personal opinion here, my "gut" tells me that it is always appropriate to become aware of the state of one's sexual health. I believe that, combined with more rigorous education and greater available resources devoted to educating people about genital herpes, this will have a positive impact on one's post-diagnosis behavior that will show up in future clinical studies. Unfortunately, increased resources are not being committed at present to educating individuals with genital herpes about their condition. As a result, I suspect that disclosure rates will plateau for the general population of HSV-2-positive persons, at least in the short-term.

 

 

[seeker]

ok, but

A, its not the CDCs money when it comes to testing.

B, it then should be policy to offer the option.

C, even if its a minority of people who actually change behavior that minority would slow/stop the spread of a virus.

D, since when has testing been about behavior and not knowledge?

E, the negative consequences are a direct result of a lack of knowledge that would be given out IF every damned splint and pill quack were up to date on their info. and if it were SOP, there might be a chance they would be.

 

 

I had to go to a private lab for my test, I found out via email and almost lost my lunch and didn't sleep. now if I had been able to go to a knowledgeable doctor and gotten my results with a " well you have H2 but its manageable and you can and will have a normal life with a few precautions, precautions that for the most part you should be doing anyway until in a committed relationship.

 

those people aren't changing because they aren't being given the proper info AND the whole reason for not testing is stigma driven thereby reinforcing the stigma. law of unintended consequences anyone?

[WCSDancer2010]

rigorous clinical studies have shown that being informed that one has genital herpes does not by and large change a person's behavior vis-a-vis disclosure. These studies have consistently shown that, once informed of a diagnosis of genital herpes, individuals are on average not more likely to disclose their diagnosis to either their current or future partners.

 

Well, perhaps their findings are because they are doing NOTHING to educate the public about what Herpes is, how it spreads (ie, asymptomatic shedding is not generally understood by the average Joe ... they think they can SEE is someone has an STD), the truth about condoms (they only give partial protection... most people believe that condoms give full protection for everything), and anything else in general about the more recent (last 10-15 years) info on STD's. Add to that we have Doctors giving out incorrect information and schools running inadequate STD education in their Sex Ed classes (I've heard some of the things these kids are being told, and NOT told ... its more about pregnancy prevention at best... and even that is not run well). So the public can't be *totally* blamed for being ignorant when the places that are *meant* to be educating them are not doing their job and to actually GET properly educated takes the skills of someone with a PHD to sort through the truth vs the hype.

 

Until we have OPEN, ADULT dialogs about STD's (as we have to at least *some* degree about HIV because it was sorta forced into the public spotlight by the HIV+ population when they got tired of all the fear-mongering hype and incorrect info that people were buying into.... and BTW, does that seem like a familiar theme to this group?) the stigma will remain and people will be too frightened to disclose. So of course the studies will find that people don't change their behavior.... DUH!

 

The CDC *should* be at the forefront of public education around STD's and diseases in general. But I personally think they are afraid that if people understood that both HSV1 and HSV2 are at EPIDEMIC levels (if it was any other disease the CDC would be all over this shit ...) that the public would freak out ... but maybe that wouldn't be a bad thing. Sorta like a slap in the face.... sometimes you need to get jerked back into a place of reality to get you to take the measures needed to get educated and take personal responsibility for your behavior.

 

As it is, the CDC is NOT acting in the best interests of the public. They just keep sweeping this shit under the rug and hoping that people won't notice. Well, I'm personally tired of the stigma that is caused by IGNORANCE ... and I think there is a rising tide of H+ people who feel the same. The HIV+ population has done a great job of spreading the reality of their condition AND they are doing great things to try to educate people about STD prevention. I think if all the main groups joined forces (HIV, HSV, and HPV) we could do some amazing things. Maybe some day that will happen.

[Theo1824]

I can't imagine that the majority of people that get diagnosed wouldnt at least take more precautions! Knowledge is power. Just because this isn't life threatening for the most part doesn't mean it can be overlooked.

[forgivenessandpeace]

I wrote to the CDC asking why they didn't suggest testing. Here was their response:

 

Thank you for your inquiry. The question you present is a very important one and also one that our Division has received frequently. We have developed a Frequently Asked Questions webpage for Genital Herpes Screening. Please take a look at this page because I believe it may clarify the reasoning behind CDC’s current recommendations: http://www.cdc.gov/std/herpes/screening.htm.

Below I have copied a few of the questions and answers from the page that may be most relevant to your concerns.

Since so many people have HSV infection but don’t know they have it, why doesn’t CDC recommend routine testing all sexually active people for genital herpes?

Herpes blood tests (also called HSV-2 type-specific serologic tests) can be very useful for diagnosing type 2 genital herpes infection in certain situations; 1) when someone has genital symptoms that might be related to herpes, and 2) when someone has a sex partner with symptomatic genital herpes. Herpes blood testing may also be useful for people seeking a full STD evaluation, especially for persons with multiple sex partners. However, CDC does not currently recommend routine type 2 HSV testing in someone with no symptoms suggestive of herpes infection (i.e., for the general population). We need additional evaluation to understand the benefits of testing, including whether routine HSV-2 testing improves health and reduces spread of infection in the population. In addition, these tests can be expensive; false positive test results may occur in some persons with a low likelihood of infection; and the diagnosis may have adverse psychological effects for some people. Although there is not enough evidence to recommend widespread testing, individual persons who are at risk for HSV-2 infection, such as those with a partner known to have a history of symptomatic herpes infection, or those with multiple partners, should consult their healthcare providers to discuss type 2 HSV serologic testing. Also, those concerned about genital herpes infection should discuss their concerns with their health care provider.

Is a blood test for genital herpes usually included when I ask to be tested for "everything" (all STDs)? Why does CDC recommend testing for other STDs but not herpes?

Herpes type 2 blood testing may or may not be included in a full STD evaluation, as STD testing depends on a number of factors, such as behavioral risk factors (e.g. number of partners, consistent condom use, etc.) and how common the infection is in the community. When getting an evaluation, it is important to ask your provider which infections are being tested for, which infections are not being tested for, and why. STD screening tests are usually done for infections that can have serious outcomes if they are left untreated. For example, finding and treating curable STDs like chlamydia can prevent those infections from leading to serious complications, such as infertility (the inability to get pregnant) in women. Genital herpes infections can cause intermittent symptoms that may be uncomfortable, but infection does not usually result in serious complications in healthy adults. Although the symptoms of genital herpes can be treated with medication, there is currently no cure for herpes infections. HSV blood testing may be useful for people seeking an STD evaluation, but CDC does not currently recommend routine HSV testing in someone with no symptoms suggestive of herpes infection. People who are specifically concerned about genital herpes should discuss with their healthcare providers whether they would benefit from testing.

Wouldn’t testing everyone for HSV limit the spread of genital herpes?

For STDs that can be cured with antibiotics, including syphilis, gonorrhea, and chlamydia, an important public health prevention strategy is to quickly identify and treat infected persons. When these infected people are treated and cured, future spread of the infection is prevented. However, genital herpes causes an incurable, chronic lifelong infection. It is not clear that the identification of persons with HSV infection would decrease the spread of HSV in the population. There is no evidence that detection of HSV infection through testing of persons with no symptoms suggestive of herpes leads to a change their sexual behavior. Because the tests can be expensive and the diagnosis may have adverse psychological or effects for some people, widespread testing for HSV is not currently recommended.

I hope this helps to answer your questions.

Public Inquiries

Division of STD Prevention, CDC

www.cdc.gov/std

[Vanguard1]

What about the adverse psychological effects of contracting this lifelong uncurable infection!!!!??

 

What a response from the CDC!

[forgivenessandpeace]

I know @Vanguard1: it's out-fucking-rageous. We will work to change this!

[WCSDancer2010]

@forgivenessandpeace

 

That was the link that I posted at the top of this post ... and that's why I posted it :(

[CityofAngels]

@seeker

 

Hi Seeker,

 

I just wanted to take a minute to address the issues you raised in your post. You wrote:

 

"ok, but

A, its not the CDCs money when it comes to testing.

B, it then should be policy to offer the option.

C, even if its a minority of people who actually change behavior that minority would slow/stop the spread of a virus.

D, since when has testing been about behavior and not knowledge?

E, the negative consequences are a direct result of a lack of knowledge that would be given out IF every damned splint and pill quack were up to date on their info. and if it were SOP, there might be a chance they would be.

 

 

I had to go to a private lab for my test, I found out via email and almost lost my lunch and didn't sleep. now if I had been able to go to a knowledgeable doctor and gotten my results with a " well you have H2 but its manageable and you can and will have a normal life with a few precautions, precautions that for the most part you should be doing anyway until in a committed relationship.

 

those people aren't changing because they aren't being given the proper info AND the whole reason for not testing is stigma driven thereby reinforcing the stigma. law of unintended consequences anyone?"

 

In response:

 

(a) No, it is not the CDC's money. That is why there are currently no federal regulations that mandate that individuals cannot get tested for HSV. It is ultimately up to the individual, in consultation with his or her doctor, whether s/he gets tested. Yet it is the function of the CDC to provide guidance and policy recommendations on best health practices, based on the best and most widely available empirical data.

 

(b) Private practices and state- and federally-funded health centers follow the CDC's policy recommendations, although they are by no means legally obligated to. The CDC likely does not recommend offering the option to test for genital herpes for the above-stated reason(s): testing is expensive, false-positives occur, and it is not clear that testing and subsequent knowledge of an infection with genital herpes has any effect on one's behavior.

 

© Yes, even a minority of individuals who chose to engage in safer-sex practices would help to stop the spread of the virus. Yet the CDC weighs the potential benefit of increased disclosure in a minority of persons against the significant and negative psychosocial consequences that accompany diagnosis for the much larger group of individuals who test positive for HSV, and then do nothing to alter their behavior(s).

 

(d) Science is about empirical observation and experiment. The values of public goods like "knowledge" are not weighed in the abstract, but with respect to the empirical and measurable consequences to which they give rise in the long- and short-term. It is part of the fabric and texture of the natural sciences to weigh any putative benefits just in terms of their measurable consequences. The claim that "knowledge is intrinsically valuable" has no clear status or meaning with scientific discourse. It is a subjective assertion of value that cannot be clarified further with the context of scientific research. For example, whether knowing Goldbach's conjecture is intrinsically valuable is up to philosophers, mathematicians, and value-theorists to decide. Natural science, by methodological design, can only answer the more narrowly-focused question concerning the measurable results that knowledge of Goldbach's conjecture brings with it.

 

(e) I fully agree that knowledge of genital herpes among most general practitioners is woefully inadequate. Yet the CDC is not reasoning that: "the only reason there are negative consequences among those who are informed of a genital herpes diagnosis is because of ignorance and stigma." Rather, the CDC is reasoning that, whatever the causes of adverse psychosocial consequences happen to be, they presently exist and will likely continue to exist in the near- and medium-term, if not also the long-term. The CDC probably sees its role as informing clinicians of best practices based on current consequences, and what might or might not improve the situation vis-a-vis disclosure and mitigation of the adverse consequences I mentioned.

[forgivenessandpeace]

The reason the CDC does not recommend disclosure is this: rigorous clinical studies have shown that being informed that one has genital herpes does not by and large change a person's behavior vis-a-vis disclosure. These studies have consistently shown that, once informed of a diagnosis of genital herpes, individuals are on average not more likely to disclose their diagnosis to either their current or future partners.

 

Could you site these studies @CityofAngels?

[CityofAngels]

@WCSDancer2010

 

I fully agree that much, much more needs to be done, and urgently so. Unfortunately, it seems like other research priorities far, far outweigh research on and education about genital herpes. Certainly, were the CDC to become far more proactive about educating the public in this regard, positive consequences would most likely follow. I recently asked one of my professors, who is an MD/Phd, whether seeker's proposal to use a mutant strand of the HSV virus to attack native HSV-2 would be plausible. He giggled a little and stated (a) that doing so would likely not remove HSV-2 entirely from the body, and more importantly, (b) that attempting to use gene therapy to cure HSV would be like using the equivalent of nuclear weapons to dig a crater in the earth. So unfortunately, research priorities trump HSV research in favor of far "sexier" conditions with bigger payoffs in terms of their relative complexity and challenge. This, in addition to the prestige that those who find effective gene therapy treatments for these diseases would garner for those who cured them. It seems that education about genital herpes is a victim of the "survival of the fittest" competition among scientists to outdo one another working on the "holy grails" of science. Remember, scientists are people too, and are attracted by many of the same goals that the rest of the population is. All of the professors who teach in my department are men who are giants in the field of molecular genetics; many of them have very big egos, and are as much motivated by prestige, academic accolades, fame, and money as the rest of the population.

[Vanguard1]

This statement has nothing to do with wide spread acceptance of HSV or educating the general public about how minor of a medical condition this is in comparison to the social stigma with HSV.

[Vanguard1]

Furthermore, if the CDC recommended regular testing, millions of Americans would be informed of their status with both HSV 1 and 2 and would gain larger acceptance and most importantly, education necessary to shatter the stigma of HSV.

[CityofAngels]

@forgivenessandpeace

 

This study highlights the fact that for most with genital herpes disclosure is dependent upon an array of variables, including the perceived likelihood of rejection:

 

http://scholarcommons.usf.edu/cgi/viewcontent.cgi?article=6477&context=etd

 

This article cites an array of studies that have examined disclosure within the context of both genital herpes and HPV:

 

http://scholarcommons.usf.edu/cgi/viewcontent.cgi?article=6477&context=etd

 

On page 21 it reports that fully 46% of women with genital herpes did not disclose their condition until after the commencement of sexual relations. This is only among those who actually did (eventually) disclose. It does not include the percentage of women who chose not to disclose at all.

 

Page 20 also cites related research on HPV, since the comorbidities of HSV and HPV are so similar: fully 69% of those who disclosed--which by definition excludes the percentage of those who chose not to disclose at all--did so after the beginning of sexual relations.

 

Among those with only casual partners, rates of disclosure are much, much lower; cf. Green et al., 2003; Scrivener et al., 2008.

 

I will post more studies as I go through my medical research bookmarks, which are numbers at over 1,000.

[CityofAngels]

@Vanguard1

 

As I already said, the CDC and other medical establishments are not going to devote limited resources to genital herpes. GH competes with many, many other diseases, most of which are far more serious than GH itself, as you say.

 

*We don't know* what Americans would or would not do were they educated about the fact that they have genital herpes. The CDC is not going to invest greater resources in education and testing just because they have a "hunch" or a "feeling" or an "intuition" that doing so "might" decrease the stigma. Perhaps doing so would *increase* the stigma instead. You can't make these statement in an evidential vacuum. They need to be borne out and supported by data and evidence. Data and evidence are what allow us to make the hard choices about what programs to support and which ones not to. We can think all we like if people found out about their genital herpes, this would decrease the stigma. Yet hypothesis built upon speculation and conjecture does not come near the threshold of validity required to make informed public policy decisions. Scientists need *data*. If they didn't have that data, they would not be able to make any informed policy decisions, and doing so would be like walking in the dark with a blindfold on and your hands tied behind your back. Just because something "sounds right" is *not enough* for a scientist. Every day, all the time conclusions that "sound right" are disproven by rigorous, in-depth scientific research. Any scientist worth his salt knows this for a fact.

[Theo1824]

@COA...

 

I mean this in the nicest way possible, but why are you on this forum? You do not have H, correct? And many things you say, though well intentioned, seem to bring a bunch of us dealing with this disease, down. We are having a hard enough time as is..

[CityofAngels]

@ Theo1824

 

Well, your question is not at all nice, and I do not appreciate it.

 

I have more than adequately addressed this question in other posts. If you would like an answer to it, you'll have to read them.

[Vanguard1]

Testing for STD's is hardly a limited resource.

[CityofAngels]

Since it is clear that my postings have discouraged certain people, I think from now on I will stop posting and leave this forum for good. I feel badly because it was never my intention to hurt anyone or to make them feel badly about themselves or their condition. Yet despite that, it seems that that has taken place.

 

My whole point in first coming on here was to discuss this ailment with people who had firsthand knowledge of it, because a girl I was dating disclosed to me. No one I had ever dated before had ever disclosed a sexually-transmitted infection to me before. I am pretty jaded, as people go, but this really took me by surprise.

 

After I gained the information I needed, I thought I could be of help by occasionally and respectfully offering an "alternative" viewpoint of someone who doesn't have "h." But it seems that I have hurt more people than I would have ever intended to.

 

Thus I wish to part by saying thank you to everybody, thank you so much for listening to me, for answering my questions when they were numerous, for offering your perspectives and unique insights, and for challenging me to think about the assumptions behind my own beliefs and reasoning. I truly believe this forum is composed of a winning group of people, and I wish you all the very best going forward with your lives.

 

Sincerely,

 

CA

[forgivenessandpeace]

Given all the evidence, the best, most cost-effective approach would be to introduce a vaccine. We currently very effectively inoculate against chickenpox (Human Herpes Virus 3). Bill Halford, Southern Illinois University School of Medicine

Dept. of Medical Microbiology, Immunology, and Cell Biology, has successfully completed animal trials of his live attenuated vaccine for HSV2 (Human Herpes Virus 2). His very informative blog is here: http://herpesvaccine.scienceblog.com/2014/05/10/how-does-the-human-immune-system-respond-to-a-hsv-2-vaccine/

He and other researchers are committed to bringing forward a vaccine soon. It wouldn't cure those of us who struggle with infections gifted by non-disclosing partners, but it would relieve a tremendous amount of human suffering. Furthermore, since the rate of infection is highest among 18-24 year olds, the cost burden on the health care system of continuing to ignore this very old virus is increasing as those young adults face potentially an entire lifetime of suppressive drug therapy.

 

There is most definitely hope @Vanguard1. Do not be discouraged.

[WCSDancer2010]

@Theo and others:

 

First - I hope that @CityofAngels won't leave.... while I understand how some people may be "hurt" by his comments, he makes very valid commentary on the REALITY of the medical world... a reality that people on here NEED TO HEAR and understand!!!

 

By understanding how the medical world works, we can better prepare to confront their way of doing things and find alternative ways to deal with Herpes in the "real" world ... the best Generals are the ones who understand the enemy ;)

 

@CoA has access to information that WE don't ... information that we need so that we can form a plan of action to change things. Sure, what he says isn't what you want to hear, but it's the reality of medical research and it's what we have to deal with..... :(