| Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | About 2 weeks ago, Dr Anna Giuliano, Chair of Cancer Epidemiology and Genetics at Moffitt cancer Center, called me and asked if I would agree to testify before the Advisory Committee on Immunization Practices (ACIP) of the Centers for Disease Control (CDC) at their 2 day meeting Oct 21 and 22nd in Atlanta. The ACIP is, among other things, considering either to make a Limited recommendation, a Broad recommendation or No recommendation on the Gardasil vaccination for boys. The difference in the 3 is huge with a Broad recommendation meaning the shots would be covered by insurance and covered by individual states' own free shots programs. At least that's the way I understand it. I immediately called Brian and asked him to go instead of me but unfortunately he will be speaking in Canada and that has been planned for months so we are stuck with me. This is akin to Brian or Jerry addressing the American Institute of CPA's on a technical tax issue. I feel like a fish out of water. I have talked to Brian I will be representing the OFC and as expected he has given me plenty of insight to incorporate into my testimony which I have composed mentally over and over but am here at my office today putting it to paper. I still haven't been told how long I can speak so it's hampering my entire thought process. Wish me luck but according to Anna, we are fighting an uphill battle but hey I have become accustomed to that over the last 3 years concerning the male connection to HPV so that part I easily accept.
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.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | David, I think you will do just fine. You certainly have impressed me with your knowledge on the topic. You may not consider yourself an expert, but you are someone that has personally been impacted by the HPV virus, which is something that many of the "experts" can not testify about. Good luck!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | You'll do great! I'm hoping they make a pro-decision on vaccination for boys before my son gets much older. I'd be willing to pay for it, but my doctor's office won't do it. I thought that I had read that it was FDA approved for boys...was that my bad?
Anyways, give it all you got, you'll do great!! I don't know that we could do the clever word play like you did above for Brian, calling him Brain on your message above...but, we'll think of something for you. :-) Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | David actually understands all this much better than he lets on. I am quite comfortable with him representing the foundation at this meeting, and am sure that he will do a great job. He knows very well the importance of this to future generations. The children vaccinated now will not be part of any interaction with HPV+ oral cancers in the future, and this fast growing segment of our patient population will quickly diminish in just 2 generations of vaccinations, vs, growing like wildfire which is what it is doing today. Only one paper has been published opposing vaccinating young boys, and that is the one that we talked about in another thread from Harvard. It will be very easy to disassemble that poorly thought out paper. Their numbers are based on something that David understands completely, since the authors and he are number crunchers. They based the numbers on two core false premises. That the average cost for treatment is $43,000 dollars. This is, as anyone who has been through this knows, completely inaccurate, and based on a paper that looked at ANTERIOR OF THE MOUTH TONGUE CANCERS, which are often treated with a surgical only solution. Today, those numbers in an HPV world are worthless. His associate at Moffit will easily make the point that 50%+ of newly diagnosed patients are HPV+, and as such - later stage POSTERIOR OF THE MOUTH finds - and according to NCCN guidelines, treated with radiation, chemo, and sometimes surgery..... average cost about $200,000 plus. Their estimates of the incidence of HPV positive lesions is off by at least 30% or more. Now if you redo the math, vaccination programs for boys makes complete fiscal sense. Of course they never even considered the cascade of financial problems that cost money (from somewhere, private pay, insurance, state, and federal) they didn't count, that happens to lost patients who were the bread winners of families that now end up on welfare programs, or even the consequences of survivors who can no longer work in their previous vocations because they cannot talk, eat/swallow properly, etc. and the long term costs of their disease and treatment based disabilities. David will be a great representative for the foundation and the cause.
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. | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | David, Having been a witness to your TV appearance as well as your previous testimony about HPV, there is no doubt in my mind that you will be extemely effective in this situation. What an honor to be asked to do this. You will do great.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Margaret, No your brain is not frozen yet. A Advisory Committee of the FDA did recommend the vaccine be given to boys and men ages 9 through 26 but based it's recommendation of Merck's application submitted on ONLY genital warts caused by HPV 6 and 11. The FDA will consider it's committee's recommendation sometime before years end and then it will become official. Getting the vaccine approved for boys for ANYTHING is better than nothing and since the vaccine has proven effective against HPV 16 and 18, those that cause the cancers we are concerned with, then getting the vaccine will eliminate those strains and anything that they could have caused post infection. Also keep in mind that we couldn't have waited for Merck or anyone for that matter to prove to the FDA that the vaccine works in preventing say oral cancer as that would have taken decades for them to vaccinate thousands of 9 to 26 year old males today and then wait and see what happens when they turned 50 or 60. I would have been 102 and doubt Moffitt would have asked me to represent the life threat of a male acquiring cancer from the HPV virus. Thanks Brian for your confidence BUT I still wish I would be watching you address this Committee rather than me. Just saying...
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.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | David,
We all know you will be fine and have great confidence in your ability to make a case. My only worry for you is the weather. Hopefully it is at least 80 degrees while you are there otherwise...you may "freeze" at a very crucial moment.
Seriously, I totally understand your angst, but just know you will do a great job.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | David
I also have seen your video clips and read the assorted newspaper interviews so I know how telegenic and personable you are. OCF will be in good hands. I often had to give speeches (more like persuasive arguments) without a time estimate so I found it useful to have a few "sound bites" (eg." the Harvard report's numbers and its accounting basis make Enron & Tyco's books look good in comparison")that I could expand on if I had time. You are the perfect advocate here since the Harvard report and other news stories all focus on the monetary aspects for male vaccination. Go get em Tiger charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Awesome David. I would wish you "luck" but I know your skill and passion are all you need to make this speech/appearance a success. What a huge opportunity to truly make a difference.
We will all be waiting to hear how it went.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | David:
The subject information you have furnished on this forum that I have read is invaluable, and proves that you are the "perfect" person to present it before the CDC. You will do a remarkable job, and the entire forum is behind you. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | |
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