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#139061 08-31-2011 09:35 PM
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I would like to know why insurance companies won't cover the HPV vaccine for boys?Since my brother had BOT cancer, I wanted my boys ( 15 & 13) to receive the vaccine. I was told I could pay for it at $185 a shot and it would be a series of 3 shots!!! Of course if they were girls, my insurance would cover it. Seems like a little gender discrimination.


Sister to Randy (47, nonsmoker)
Base of tongue, scc, stage IV, lymph node involvement
Dx Nov 2009, started rad/ chemotherapy 12/09,PEG tube
Finished 02/10
RandysSister #139063 08-31-2011 10:17 PM
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Randy's Sister, Human papillomavirus (HPV) infection has been established as a necessary factor in the development of cervical cancer and that is why insurance companies do not mind covering it as in long-term it saves them from treatment expenses.

In case of Oral cancer, HPV is one of the factor that accounts for over 30% of incidences. Economics is preventing them for accepting it as a norm but in few years from now with growing scientific evidence, they may start covering it atleast for the youth who seem to be most affected.


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
Eshwar N #139066 08-31-2011 11:33 PM
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OCF fought with the CDC several times and David Hastings went to their meeting on vaccines as our representative. The broadest recommendation was given at that time for pediatricians to even vaccinate boys. Before that they were using the vaccine "off-label"" which puts their license at risk if something goes wrong. That approval got rid of the off label use of it issue. But there has been no clinical trial which show definitively that it will prevent oral cancers, regardless of what the scientific community believes (that it will). So with few parents realizing that it is beneficial (since all they hear about is genital benign warts) they don't pursue it. Even if insurance did pay for it they wouldn't see the value.

In October there is another CDC meeting where we hope to fight for and get a statement that includes oral / head and neck cancers in the discussion. Once that happens, insurance companies will have a vaccine that is not just for cervical cancers (men don't get them) so there will be a legal argument to get them to cover giving boys the shot as well.

By the by, with about 50% of girls in the US vaccinated after many years of the vaccine being n the market, most have only had one of the three shots in the series. It is interesting to see that the earliest girls (single shot) still have 100% coverage almost a decade out, meaning that the booster shots may not in the long run be necessary. How long the vaccine will be protective is still to be determined - a decade is good, but it will take many more years to find out how long (perhaps a life time) the coverage lasts.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #139070 09-01-2011 06:34 AM
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Actually the CDC voted to give the male Gardasil vaccination it's Permissive Recommendation which is just short of what they call their Routine Recommendation which is their highest recommendation. Difference is that if a parent with a boy goes to a doctor the doctor is not required to inform the parent of the availability of the vaccine unless the parent asks.

Also bear in mind that the FDA has only approved the male HPV vaccine for the treatment of Genital Warts, NOT oral cancer since the only approved studies so far were for genital warts. That was the sticking point with the CDC and that's what I and others were there to try and persuade the inner circle of the ACIP (Advisory Committee on Immunization Practices)to look beyond and approve this vaccine for EVERYTHING that HPV can cause in males not just the one thing the study included. Gardasil wanted to bring the male HPV vaccine to market as fast as possible and if they had to do a study on HPV and oral cancer that would have taken decades so they opted to study just genital warts which I believe only took 5 years.

Also keep in mind that one of the criteria that the ACIP MUST consider is the cost of Quality Adjusted Life Years (QALY) that adding this vaccine to a previously approved female vaccination program would cost. Also realize that if 100% of females were vaccinated then the cost to add the male vaccine would be the highest as the only beneficiaries could be what they called MSM (Men having Sex with Men). The Committee was presented with 5 different QALY studies which all started off with assuming a minimum of a 30% female vaccination rate (even though historically statistics show that only 17% of females get all 3 shots) and then going up from that. They also only considered the benefits of reducing the medical costs associated with eliminating male genital warts. So you can imagine, relatively speaking, the cost of QALY's was very high. Some studies did attempt to add the costs associated with oral, anal and penal cancers but the Committee was told that "UNTIL we are presented with proven data and the drug is approved for those diseases, we can not consider them in our recommendation."

The male vaccine is included in the federally funded VFC (Vaccine for Children) program which I believe means it's free to covered individuals but I assume only for what the FDA has approved the vaccine for which again is not for the Tx of oral cancer. I assume other insurance carriers would have the same limitations.





David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #141677 10-18-2011 06:51 AM
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It's open enrollment time for employee benefits for 2012. I just got my package in the mail from my employer.

New for 2012 is HPV vaccine schedule fully covered under the wellness program for both BOYS AND GIRLS.


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #141684 10-18-2011 10:53 AM
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My daughter has had 2 of the 3 shots and at 18 I think it was her first pap and it came out abnormal...after freezing and a 2 colposcopys I think it is Nov 17th she is going for Laser Surgery. Here is mom telling her Oh a pap smear is nothing (she has never been with a man...she is gay) and what happens she has an abnormal pap test...she is freaking out bout being put to sleep for this surgery. I am not worrying about this, I've read where in young women it can change in a couple years to normal. She has mild dysplasia it is called. I pray I don't have to worry...


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
SUEZ #141701 10-18-2011 07:22 PM
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Low grade dysplasia is not a big threat, it seldom progresses to anything significant, but the safe play is to remove it. And yes the HPV16 virus can be transferred between people of the same sex, so the virus is an equal opportunity offender.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #142010 10-25-2011 04:33 AM
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Nice segment just aired on Good Morning America discussing HPV vaccine for boys. Just the facts. Nice.


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #142011 10-25-2011 05:04 AM
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Just saw that segment too on GMA, nice to hear . . . .


Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!

*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker

LETS MAKE ORAL CANCER HISTORY!
Susan Lauria #142012 10-25-2011 05:11 AM
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A 2nd shorter segment just aired on GMA a couple minutes ago. The first one was with George Stephenopolis and a doctor interview, this second one a news recap. Expecting the CDC to approve the vaccine for boys to prevent head and neck cancers.


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #142016 10-25-2011 07:52 AM
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awesome!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
MikeG #142025 10-25-2011 10:24 AM
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The Advisory Committee on Immunization Practices of the Centers for Disease Control and Prevention is now recommending that 11- and 12-year-old boys routinely receive HPV vaccinations:

http://www.nytimes.com/2011/10/26/health/policy/26vaccine.html

The article notes that private insurers use the committee's recommendations to determine what vaccines they will pay for and that under last year's federal health-care overhaul, insurers participating in the health-insurance exchanges created by the law must offer the vaccines that the committee recommends as routine.



Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Leslie B #142033 10-25-2011 12:07 PM
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To Brian and David and all who kept the HPV topic out there, you have saved many lives of our future adults.

Thank you!


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #142036 10-25-2011 12:23 PM
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CNN dot com has this:

http://www.cnn.com/2011/10/25/health/HPV-vaccine/index.html?hpt=hp_t2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #142037 10-25-2011 12:42 PM
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To Randy's Sister, This was your thread.
Looks like things have changed for your boys!


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
MikeG #142042 10-25-2011 02:29 PM
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We have come a long way in the past 5 years with HPV. WAY back then most doctors didn't even recognize HPV as a causative agent for Oral Cancer. Dx'ed in May of 2006 with my Tx ending in Aug I had to fight to even get Moffitt to send my cancer slides to Johns Hopkins to test for the presence of HPV. Testing positive I convinced the St Pete Times to write an article about the male connection to HPV. Because of that I was invited to testify before the Florida House in the Spring of 2007 which was considering a mandatory Gardasil HPV vaccination for girls entering the 9th grade. Before the vote, the sponsor changed it from mandatory to provide an "opt out" clause meaning no one had to get it if they didn't want and despite that it still failed along political lines. My mask and I testified that HPV affected men as well as women and vaccinating females would save lives.

Next Brian asked me to testify on behalf of the OCF before this same committee, the ACIP. That happened in Oct of 2009. I was one of only 6 to be allowed to speak. Previously this Committee had given it's highest recommendation (Routine) for the female HPV vaccination but now was considering the male vaccination. It was evident that the Committee would not listen to logic but would only allow testimony about the vaccine's proven effect on male Genital Warts. Since they wouldn't consider the cost savings associated with preventing all other male HPV cancers the Committee only gave it their Permissive recommendation meaning that parents would have to ask their doctors about it and more importantly the vaccine's cost would be much higher. The Committee said that when the medical community could "prove" it's connection to the other cancers then they would reconsider. We all imagined a lengthy period of time before this issue would be brought up again.

So now just 2 short years later and the Committee using the SAME information it had 2 years ago concludes that NOW it is cost effective to give it it's Routine recommendation. Go figure but no one will complain!

Now the war will start up again at the state level to see if new bills will be introduced to make it mandatory, with or without a "opt out" clause, for either girls or boys or both. I have already placed calls to the previous sponsors here in Fl.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
davidcpa #142044 10-25-2011 04:36 PM
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This is a major leap forward for future generations who will not get oral cancer from this virus if parents get involved in prevention. I have been on this since 1999, and the science since then has changed little. What it takes is hammering on the people at the CDC every opportunity.

This story is making all the news wires, and we can thank the Bachman's and Perry's of the world for causing a stink ( in their own self interest to appeal to one portion of the electorate) to do more than the several hundred phone calls I have made to those in power of the last 4 years of really pushing for this.

Sometimes it takes an idiot to build a village. Thank all of you people who do not believe in science for getting this out front and center. You have created what you didn't wish.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
davidcpa #142045 10-25-2011 04:36 PM
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David, my hat's off to you (as always). It staggers me to realize that there are still factions within the political community who are warning parents against the vaccine for so-called moral reasons. Predominantly anti-sexual of course, but also under the banner of the "dangers" of vaccinations in general.

The Dark Ages are still live. But thanks to you and Brian and others maybe some lights are coming on.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #142048 10-25-2011 06:33 PM
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Awesome work on behalf of the boys in our lives. Is it accurate that the vaccine must be received before the 27th birthday?


Robin, caregiver to husband, Andy (57 yo non-smoker)
1/2011 dx scc stage 4 -primary- tonsil/bot
2/2011 surgery/rnd/ imrt rad/ 3 cycles cisplatin
6/2011 recurrence - mets to bone
7/2011 tx carbo/erbitux/5 FU- pet showed disease progression
11/2011- present clinical trial

robinleigh #142050 10-25-2011 08:04 PM
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Excellent work David and Brian!!! Thank you for what you are doing to bring awareness to HPV+ SCC and the benefits of getting vaccinated. Thru your efforts, many will get vaccinated. This will save many from suffering thru the barbaric treatments or worse, from dying of HPV+ SCC. You both make me proud to be associated with OCF and the good work it does. Hoping more changes will take place and it will be mandatory for everyone to get this important set of shots.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
ChristineB #142056 10-25-2011 09:24 PM
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While both the vaccines have age "recommendations," their efficacy is much more significant if it is GIVEN previous to any sexual activity. No parent wants to hear their daughter or son is, to some extent, sexually active by 13, but that is what national surveys show. Every parent says " not my daughter/son" but when the kids get interviewed in a totally anonymous situation, they are bluntly honest, and that is where the numbers come from.

So in an average person, the FDA "GUESSES THAT BY 26-27 SOME SEXUAL ACTIVITY HAS TAKEN PLACE, BUT THERE HAVE NOT BEEN TONS OF MULTIPLE PARTNERS, AND THEREFORE EXPOSURE TO THE VIRUS ODDS ARE STILL LOW. AFTER THAT POINT, THEY FEEL THAT MOST PEOPLE HAVE HAD ENOGHT PARTNERS TO HAVE RUN INTO IT.

Sorry about the caps, lock was on and it's too late to retype it all.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
Brian Hill #142112 10-26-2011 09:42 PM
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It seems like things are changing quickly for a better future for my boys. Thanks to all of you in the forefront of the fight against
this terrible disease. I will be Checking back with my insurance to see if there have been changes. It is so scary to see all the young people who write on this board. My brother is in his 40s but it seems more distressing to see posters in their 20s.


Sister to Randy (47, nonsmoker)
Base of tongue, scc, stage IV, lymph node involvement
Dx Nov 2009, started rad/ chemotherapy 12/09,PEG tube
Finished 02/10
RandysSister #142125 10-27-2011 09:07 AM
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Age 26-7 and the mighty FDA guesses that SOME sexual activity has taken place? Yikes, what century are those people living in?


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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