RRP ISA Survey Results

    (Important Disclaimer)


    Newsletter: 4-22-09

    Dear RRP Community Member,

    I assume that you may have been following the RRP Forum discussions at http://rrpwebsite.org/forum/ and also following the website at http://rrpwebsite.org. These are some of the highlights in the past few months.

    (1) RRP ISA first introduced artemisinin (ART) as a potentially powerful treatment modality for RRP in an RRP Focus Session in September 2007.  Out of 15 patients reporting in to RRP ISA (or RRPF), 13 have reported varying degrees of success with ART, though we lost touch with one person.

    Dr. Andy Ingliss in Seattle has had just one pediatric patient on ART, and it appears that it significantly altered the recurrence rate for the better. Dr. Robert Bastian in Chicago now has about a dozen adult RRP patients on ART, and he has already begun collecting "before and after" photographs. He states that early results are very encouraging and non-trivial. My own physician in Seattle (Dr. John Burgoyne) reports that he has never before seen my larynx look as good, and he is putting some of his other patients on ART. Dr. Tom Broker (a world class molecular biologist) says that early results show that ART is indeed biologically active in HPV-tumors and early results were surprisingly encouraging.

    Bye the bye, I have heard from patients seeing Drs. Zeitels (in Boston) and Libby (in Clark Rosen's shop), two prominent RRP doctors in their own right. The reports of both patients are cited in the "patient reports" page above. The results again were described as dramatic. Another patient who is a registered nurse with pulmonary and tracheal disease again confirmed today that her CT scans, which previously lit up for RRP (or cancer?), showed significant shrinkage or disappearance after using ART.

    I personally have never seen a treatment modality for RRP with this rate or degree of success. It is said that no intervention works with everyone, but if the patients themselves are to be believed, ART has worked on difficult and intractable cases. Patients themselves are saying that it worked even when cidofovir did not work.

    That's all well and good, you might think, but last September when Bill Stern and I said that artemisinin should be elevated to the top of any list of research priorities for study, the RRP Task Force shrugged its collective shoulders and didn't do much of anything, as documented on http://www.rrpwebsite.org/index.cfm/fuseaction/category.display/category_ID/379/.

    Of course, the Task Force only meets about twice a year for 1-1 1/2 hours per session (no email discussions between meetings are  encouraged) so I wasn't expecting that much. I wasn't that surprised, therefore, when it failed to invite Dr. Richard Schlegel to present in May 2009, which it had promised to do in its September 2008 meeting, as reflected in its minutes. Dr. Schlegel has now made other plans. at will not be able to come to theMay Task Force meeting. 

    As for the $150,000 that RRP ISA and the RRPF generously offered the RRP Task Force/otolaryngological community to research ART's effects on RRP? No one even acknowledged that an offer had been made. 

    Sometimes, we advocates feel a little like the Lone Ranger. All we can say when stuff like this comes up is: Go figure.

    Now, I have asked several times for 15 minutes to present at the Task Force's May 22, 2009 meeting in Seattle. I have information and data to present, even patient photographs, but I have not yet heard whether I will be offered more than five minutes (the  usual). I have made it abundantly clear that I can't do it in five minutes and refuse to even try.

    All I can say at this point is that it looks like yet another year may go by without even a nod from the very otolaryngologists who, by all rights, should be at the forefront of any leadership effort to find effective ways to manage this dreadful disease. Thus far, nearly two years have gone by with barely an acknowledgement from the RRP community.

    My hope is that there is indeed a place for ART in the May meeting of the RRP Task Force. Whether or not we are given an adequate time allocation, however, I am preparing a Plan B.

    It involves creating a DVD for circulation within the RRP community. My plan is to send it to interested physicians as well as patients. It will include presentations by patients as well as physicians who have used ART, and also presentations--assuming I can get them--from Dr. Tom Broker, Drs. Richard Schlegel and Dr. Tomikazu Sasaki at the University of Washington. I hope to release it in July/August 2009.

    My hope is that it will be a very "populist" effort, not an elite effort, and one that is conspicuously intended to blow past any and all informational control points. . . .

    (2) One of Dr. Robert Bastian's patients recently contacted me at my request. ART wasn't working for her, and in questioning her, I learned she was taking it with water alone. No food of any kind.

    That in itself would explain the failure, and she will be redoing the ART very soon. I also discussed the issue with Dr. Bastian and others, and they concur with my thinking here.

    I have just now rewritten the Guidelines (I) for accuracy and clarity. My advice is that if you have previously printed that page out, toss it. Please reread it again very carefully. It is imperative that food containing a significant fat content be used, as well as water. By significant, I mean that the fat content should at least equal a glass of whole milk.

    (3) I recently talked to Dr. Chris Hartnick of the Massachusetts Eye and Ear Infirmary PDL project at Harvard about several items of interest. Those of you who have been following the discussion on Avastin on the Forum will know that I mentioned that group recently. Though I have no mitigating clarifications to make pertaining to anything that I said in connection with Dr. Zeitel's work with Avastin, there were some important clarifications I felt the need to make with respect to the Eye and Ear Infirmary's work.

    First off, they don't even use a PDL (Pulse Dye Laser) anymore. They use the pulsed KTP (Dr. Zeitels had nothing to do with  that). I asked why Dr. Zeitels didn't share his scruples about subepitheleal bleeding associated with the PDL and indeed, I received no confirmation that he did. I do, however, accept Dr. Hartnick's statement that Dr. Zeitel's pronouncements in 2006 implicating the PDL in treatment-induced injuries was something that he himself did not agree with. I have to admit that I was somewhat relieved to hear that Dr. Hartnick wasn't hanging on to someone else's every word. It made sense and it took the wind out of my sails, so to speak. From there on, we were fast friends.

    Secondly, I learned that the physicians at the Massachusetts Eye and Ear Infirmary don't use their pulsed laser in an outpatient setting. They routinely use it in the operating room. The reason that I was given was because kids can't do outpatient-pulsed-anything.

    I accept that rationale, but I was relieved for yet another reason. Dr. Nigel Pashley and I disagree on almost everything--you can search the website for some interesting tidbits--except for the importance of managing the laryngeal ventricles. One can't properly manage the ventricles in an outpatient-setting. In that regard, I think that Dr. Hartnick's kids are being optimally served by being forced in every single procedure to have it done in the operating room.

    I rather think the same is true in the case of adults, but that's a whole different discussion.

    My conversation with Dr. Hartnick lasted two hours. I came away thinking that this was a truly unique physician, very lucid, very caring and very, very much committed to trying to move things forward in the right way with RRP.

    Moreover, he's a secret policy wonk and I loved him for it.

    He himself suggested that Harvard might sponsor a two day conference for doctors and patients in 2010, a conference that will confer CME credits to physicians.

    He also suggested Harvard's building a database (similar to what RRP ISA and the RRPF have), and I said that this would be the greatest thing since sliced bread, rendering obsolete the duplication of effort that patients must make in filling out a survey from one of the advocate groups and then the other one. RRP ISA would scrap its survey in an instant, and I'm pretty sure the RRPF would as well, if Harvard could take the best of what we offer and add even more, putting it into the physicians' hands with the Harvard imprimatur on it.

    We ended off by my telling him that these sort of initiatives were what I believed the RRP Task Force should have been facilitating all along, but he chose not to go there. Wise man.

    It seems like an appropriate point in which to close this newsletter, yes?

    This is Earth Day. It seemed appropriate to celebrate it with a newsletter. I was hoping to get it out the door today. I'll keep in touch as things develop and thank you for your support and any time you've taken in reviewing this material.

    RRP ISA's board and I sincerely wish everyone the very best in closing.

    Warm regards,

    Michael Green, MSW, LICSW
    President and Executive Director
    International RRP ISA Center
    PO Box 4330
    Bellingham, WA. 98227

    RRP ISA is a non-profit, charitable 501(c)(3) corporation,  Federal ID 91-2156850.