Wednesday, October 26, 2011

ACIP Finally Recommends HPV Vaccine for Boys/Young Men

After two years of stalling, the ACIP (Advisory Committee for Immunication Practices) has decided to finally make the HPV vaccine recommended for boys and young men instead of approved for them which is where they left it over the past two years.

In the meantime, those same young boys have grown into young men who have inevitably passed on this virus to any of not all of the women with whom they have had any type of sexual contact. Even kissing is now being considered as one of the means of transmission for the virus.

It has truly been remiss on the part of the ACIP as well as the CDC for not having employed research information available more than two years ago and to finally get around to using it now. The damage they have done is irreparable and we can only hope that any campaigns which the CDC now develops in light of this will be sufficient to make up for the damage they have already caused. To follow is commentary by Director of the CDC's Infection Disease unit who refers to recent information. While additional information has been collected, this information to which she refers has been in existence of over two years. I'd like to know how Dr. Schuchat explains the CDC not having put pressure on the ACIP in addition to running their own campaigns (of which I've seen none) and allowing more American citizens to become at risk for the six cancers which HPV is now known to cause:

Thursday, October 20, 2011

New Cervical Screening Guidelines Introduced

It has been five years since the last series of guidelines regarding cervical screening were introduced. This was the culmination of newly acquired information from 2000 (the time of the previous guidelines) to 2005. Given that significant and substantial information has been gained in these past five years, release of these recommendations was certainly anticipated.

The means by which they have been released especially with regard to public comment is certainly unacceptable. Having been released two days ago, comments are only being accepted through November 15, 2011 at which time comments will be reviewed and final recommendations issued. The ACS will review all information and make its recommendations some time in 2012.

The individuals most affected by this virus (HPV) should certainly have the ablitity to comment of screening procedures and other relevant issues yet nothing has been promoted via any media outlets informing women of the opportunity to have their voices heard, nor has there been a more patient-friendly version of these recommendations provided that would clearly summarize the changes for the lay person.

One thing which strikes me is the fact that they admit they have no information available to determine how to incorporate known risk factors into these guidelines! One must ask, with all the research being conducted - why not?

As a registered nurse, a patient's risk factors for any disease were always considered with respect to that patient's follow-up and treatment, yet this isn't the case here. I disagree with the exclusion of testing of all women under 21 years of age. This blatantly disregards two of the known risk factors which can effect persistent disease; early sexual onset and multiple partners. Yet in the 2006 guidelines, this same organization stated: "Indirect evidence suggests most of the benefit can be obtained by beginning screening within 3 years of onset of sexual activity or age 21 (whichever comes first).." and "The USPSTF concludes that the benefits of screening substantially outweigh potential harms."

If this were a static situation and people never changed relationships perhaps these proposals would be more plausible but this simply isn't the case. By way of example, if a woman changed relationships a month after receiving her pap, she may then be dealing with a high risk strain of HPV for three years before being tested again. I have spoken to too many women, even those in monogomous relationships, whose HPV has advanced at a far faster pace than this.

They point to "notable limitations in the current evidence" as it relates to harms of HPV testing. Also mentioned is the need for more research to incorporate individual risk factors thereby preventing overdiagnosis and overutilization of resources. Are these the same risk factors which they have totally ignored in making their current recommendations. Even without specific and direct evidence, it is only common sense that a woman's risk factors play an obvious part in her treatment. How will the two risk factors of early sexual onset and multiple partners be accurately assessed if an entire cohort of women (those under 21) are being excluded from testing?

What these organizations also fail to take into consideration is that guidelines or not, many of the unnecessary treatments and procedures are made because of the total lack of knowledge and education with regard to HPV. Doctors recommending LEEP or other such procedures for CIN1 lesions which is clearly contradicted in the current guidelines since 90% of these regress within 24 months; total hysterectomies for CIN3, also contraindicated by current guideilnes but being done by physicians none-the-less. Where does the acknowledgement of a need for better training of these physicians come in?

A very interesting point is the total reversal of the recommendations made in the 2006 guidelines regarding HIV-infected women which, according to those guidelines, should be no different than the screening for non-infected women. This made no sense to me from the onset since HIV is know to reduce the body's immune system and leave the individual compromised regarding other infections including HPV.

The point here is not HIV but how organizations so convinced that they know what is right have now in essence acknowledged that they've had it wrong for the past five years. The new proposal states the following: "In contrast, women who are HIV positive are at such increased risk that the U.S. Public Health Service has issued separate screening guidelines suggesting that they be screened twice within the first year after initial HIV diagnosis and annually thereafter." This is quite a turn around from the recommendations which have been followed for the last five years. Can we afford to be waiting five years for these organizations to recognize the error of their ways with these newly proposed guidelines?

It was the initiation of pap screening (obviously in conjunction with the frequency of which it was performed) which has reduced the cervical cancer rate over the past fifty years in the area of 70%. It appears that women are in for a rude awakening if these guidelines are implemented by ACOG and ACS. It is truly unfortunate for those women whose precancerous and cancerous lesions would have otherwise been discovered will now have to joint the ranks of "survivors" if they make it that far. Why should we have to be waiting five years for a spike in cervical cancer as a result of these changes and the admitted lack of information being incorporated in them? No woman, or her surviving family should have to learn five years down the road that yet another mistake was made as it has in the case of women with HIV.

You can read the draft recommendations at the following link:

Please provide your comments before November 15th at the following link:

I will participating in the cervical cancer screening briefing by the US Preventative Services Task Force tomorrow afternoon and will provide any additional information after that time.

Monday, October 10, 2011

Would You Benefit from Support Regardng Your HPV?

If the answer to that question is yes, then please join us and register for The HPV Support Network Forum accessible from:

We look forward to seeing you there!

Wednesday, October 5, 2011

New HPV Support Network Forum Goes Live October 7th

The HPV Support Network has maintained an online presence for some years now. It provides significant informational resources for both patients nad providers and is certified by HONcode for providing medically accurate information.

The one thing the site has not had, until now, is an online forum to provide the all too necessary support and feedback that individuals can receive from each other.

On Friday October 7, 2011 the HPV Support Forum will go live and can be accessed directly from The HPV Support Network home page. We invite anyone with HPV or who has questions, concerns and/or needs support to please join us in making this forum the most beneficial it can be.

Unlike other sites which default posts to the Internet (which only serves to boost the sites ratings at the expense of people's privacy), this site is only accessible to registered users and posts are private by default. While raising a sites rankings does indeed make it more visible with respect to Internet searches, we believe there are other ways to achieve these ends without exposing one's private information.

Any suggestions for improvement or changes are welcomed as we navigate this new territory together.

Tuesday, October 4, 2011

Support Websites - When Rankings Outweigh Privacy

My website has been in existence for several years now. I have numerous other groups all concerned about HPV and dissemination of information regarding awareness, education and vaccination whose links I have placed on my site and visa versa. We all look to help each other in what is one of our main goals - to educate as many people as we can and provide them with as many reputable sites that may help to facilitate this.

Unfortunately this hasn't been the same with one particular site. I have praised the site for the support connections it has allowed women (and men) to make and the great strides and award winning status it has achieved and I have more integrity than to call them out by name.

However, I have never been happy with the fact that people's posts are, by default sent to "share with the public", an action which places that post and all subsequent responses on the Intenet which can NEVER be removed. One may think that it is no big deal, people have screen names. Simply put many peoples circumstances especially when you are indicated where you're from etc in your profile may divulge just who you are to someone reading your story, screen name or not. Many people are just as concerned about replying to such posts which only lessens the support that individual gets all because they didn't see the box which asked them to make a choice before they hit POST.

I've been told when I informed people of this that it wasn't my place to do so and that if people had chosen their post as public it was probably because that is the way they wanted it. Nonsense! I've spoken to far too many of these people who said they never realized that is what they were doing and thanked me profusely for letting the know.

What this does and what they have acknowledged in their reply (unless they've deleted them) is that having posts go to the Internet makes their site more accessible. This is true because it boosts their site ratings every time a post gets picked up by the search engine spiders (as they're called) as linked back to the site.

My response to that is that there are certainly other means by which to utilize SEO (search engine optimization) to increase market share while still maintaining people's privacy. So, despite my significant following on their site, my account has now been banned with the following explanation:


We have removed your account as we have received notice today that you
are again contacting people via messages to promote your site. We have
repeatedly asked you not to do this as it violates our guidelines.

My profile page has contained my website email address and website and blog info almost from day one so why should this be an issue. This particular reference was the fact that I utilized a "passthrough" link (through my site to another) to get people to the most current HPV related guidelines. What bothers me most is the utter hypocrisy. Dozens if not more members of this same site list their blog links, Facebook links to sites they have created yet they continue unhindered as a member.

Why would someone with such a successful site need to create guidelines that prevent others from listing links (which dozens of people do all the time) yet my own are off limits? I noticed several people leaving blog links so several months ago I did the same and was chastised and had that post deleted while others have continued to post their blog links totally ignored. I've been told they simply "weren't aware" of these other breaches in their guidelines". If you believe that one, I've got a bridge to sell you too.

One must ponder the question, why if getting this information out is the ultimate priority why they would attempt to maintain their members like cloistered nuns unable to make references to the "outside world". My site is certified by HONCode for accurate medical information and certainly SHOULD BE no threat to this wonderful site but that's the way it certainly seems. Self promotion for someones EBay business for example would certainly be inappropriate, but referral to a site with the same intentions?

Just keep in mind when joining any forum or looking at any site to check if they are approved by HONcode (something I don't think this site actually is but I could be wrong). I simply never recall seeing their logo on the site. Is your information valued as well as your privacy or are the most intimate details of your personal life spread about the Internet for the purposes of making a site more accessible. More accessible also means higher rankings and the ability to charge higher rates for advertising and the like. Is this the way you want YOUR private information utilized?

If not, then send a message loud and clear that your personal information is private and should remain that way by default. That obtaining as much accurate information as possible is important to you even if it means visiting other sites to do it and being able to pass along valued links to other members is important to you. In addition you can choose to leave. Don't worry you won't be abandoned as there is a place where you can exchange this same information without fear of it being sent to the Internet and where your privacy comes first!

The HPV Support Network Forums will be active on Friday October 7th and anyone wishing to share their information without fear of disclosure or limitations on what information you are being allowed to have is not an issue here. We value your privacy above our rankings and can find other ways to make our various sites (Website, blog, Facebook and Twitter accounts) accessible without stooping to these tactics.

It is my personal opinion that there is perhaps nothing worse than being used and manipulated at a time when one is so vulnerable.