ASCO, Patient Advocacy and Hope-Entry One

This will be a multi-piece blog.  One blog simply isn’t enough.  I recently had the honor of attending ASCO on behalf of the Recurrent Respiratory Papilloma Foundation (RRPF).  ASCO stands for American Society of Clinical Oncology.  It is the world’s largest gathering of specialists, advocates, researchers, etc…for the field of Oncology-which represents more than just cancer care.  For todays blog, I am going to focus on a piece in the Global HPV session….why that, in what can only be described as  “sea of information” to send out?  HPV and RRP are siamese twins, so to speak.  The future of HPV will and does impact the future of RRP.

So, here we go.  Let’s go ahead and disclose this blog is about the HPV Vaccine.  Stay with me…it’s good stuff.

Let’s get a little HPV background:

  • Most humans that are infected clear the virus within 180 days.
  • Eighty percent, yes 80%, of the population has been infected by the age of 50.
  • HPV causes 600,000 world-wide deaths per year.
  • Currently, the HPV vaccine is available in 34% of countries world-wide.
  • Brazil has the highest death-rate due to cervical cancer, a HPV positive cancer.
  • Science has proven that HPV is found in cervical cancers, many head and neck cancers (especially non-smokers), anal cancers, penis cancers, and most recently the connection to some NSCLC (non-small cell lung cancer).
  • There is a social stigma attached to the HPV virus, especially in the U.S.
  • Recurrent Respiratory Papilloma is NOT a sexually transmitted disease. 
  • Transient HPV infection can be invisible
  • 70-80% of all cervical infection is HPV 16/18
  • WHO guidelines call for HPV DNA testing along with pap smear cytology to show with a 90% sensitivity no HPV infection.  (A negative pap smear does not mean you are not a HPV carrier-hence the need for HPV DNA testing.)
  • Oropharynx cancer shows 80% are HPV positive
  • There are over 200 types of HPV
  • HPV 6, 11, 16, 18 are the most common strains found in cervical, H/N, lung and RRP as well as anal/penis.
  • Various medical organizations recommend HPV vaccination for all boys and girls aged 11 to 13, adult males through age 21, adult females through age 26, gay and bisexual men, and men and women with compromised immune systems through age 26 if they did not get fully vaccinated at a younger age.

There’s just a tidbit of the far reaching impact of the HPV virus.

We have something readily available to us that can and does create a dramatic reduction in infection rates of genital HPV.  We have something readily available to us that has shown scientific promise in future tumor prevention in those already infected.  (RRP studies are still in infancy and while there is some evidence it can help a patient already infected with RRP, the information is too new and data pool too small to truly include in this blog entry.)

I hope at this time, as a reader, you are going what??  What do we have that can prevent me from getting nine strains of HPV and drastically lower the chances of me developing certain cancers?  What can even show some promise in a person already infected with HPV to help lower their viral load?

Gardasil 9 by Merck.  A three dose series vaccination that has proven to be safe and effective.  (Protects against nine HPV strains, 6, 11, 16, 18, 31, 33, 45, 52, 58)  Vaccination can begin as young as 9 years of age in both girls and boys.  Nine?  But doesn’t this vaccination give my child permission to be sexually active?  No.  This vaccination will help protect your child from infection of HPV….oh, but my child is going to wait until marriage….great.  Wonderful.  What if they marry someone that is infected?  What if, God forbid, they are in college one day and raped behind a dumpster?  What if someone puts a drug in their soda at a random place one day?  Wouldn’t you like to know that you did everything you could to insure their safety from infection and future cancers?  And then there is the population that isn’t talked about…..RRP….how does that relate to this vaccine if it’s  (RRP) not a sexually transmitted disease?

RRP-typically HPV 6, 11.  Juvenille onset usually presents by the age of five.  Wait?  A five year old with HPV?  Yes…..a five year old.  A three year old.  A one year old.  How? The truthful answer is the answer isn’t finite.  It’s a muddy answer…but what we do know is that the child, whether during birth or in-utero is infected by the HPV virus.  Most children are able to clear this virus with their immune system…but those few that cannot….develop RRP.  (See “Ok, but I still don’t get how the Gardasil 9 HPV vaccine relates.”  If the parents of that child were not infected (did the Dad infect the Mom, was the Mom already infected…and on and on), that child, based upon how HPV 6/11 works should not be infected with the virus to begin with…no development of RRP.  Now, with all that said, the infection route for the child is still muddy.  The only certainty is that the child became infected.  The how, when, why and where are still full of uncertainties.  If for no other reason than to potentially create a “herd” immunity to certain strains of HPV….to, in theory, maybe one day prevent another child from developing RRP…vaccinate.

While at ASCO, we were presented some very compelling data to the vaccine and its success rate in dramatically decreasing infection of genital HPV.


Yes, you are seeing correctly.  This is dramatic.

600,000 deaths world-wide each year.  That’s enough to justify vaccination of our children.  Upon speaking with a researcher at St. Jude, he gave a compelling argument as to why vaccination is not an open door to sexual activity.  In their experience, they actually believe it brings a reduction to sexual activity…the conversation regarding the reality of sexual activity creates knowledge in the child about dangers related to unprotected sexual activity as well as the desire to protect themselves from infection.

What if you have already started the vaccination process and didn’t choose Gardasil 9? You can switch to the Gardasil 9 series.  What if I took the prior vaccination?  You are good.  While the new vaccine does protect against more strains, you are protected from 6, 11, 16 and 18.

It’s safe (, it’s effective and it could change the future in regards to several cancers.  It gives me great hope that due to its safety and effectiveness that a cure for RRP is truly around the corner…which is my advocacy focus.

2 thoughts on “ASCO, Patient Advocacy and Hope-Entry One

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