RRP ISA Survey Results

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    Dropping the Ball

    by Kathy Blankenship (9/2007)


    I see NO reference here (see link above) on Merck's website about head and neck cancer being a consequence of HPV. And this is despite a conversation in 2006 with Merck, Michael Green, and Dr. Tom Broker, and follow up conversations regarding this very issue where input was given on RRP and head and neck cancers for inclusion in their website. When >25% of head and neck cancers are known to be caused by HPV disease, then I think this is a very glaring omission. We're not asking Merck to tell people that Gardasil will prevent RRP or head and neck cancer. We are asking them to tell the whole story about the consequences of HPV disease - which is an integral part of their website. When 28,000 Americans are diagnosed with oral cancers each year, then I believe that Merck's educational campaign about HPV disease and it's website are missing the boat. Additionally, Merck's HPV website does not even mention the 100,000 worldwide cases of penile cancer each year.

    Speaking from personal experience, the consequences of HPV induced head and neck cancers and associated treatments which have morbid side effects, are devastating. My vocal cords are gone, I have to breathe through a hole in my neck, and I can no longer swallow which means I puree all my foods and syringe them into a tube in my stomach. Do these things affect the quality of my life? You bet! I can't even swallow my own saliva. Did I know that HPV caused head and neck cancer? Not until I had cancer. In fact I had never heard of RRP until I was diagnosed with it. If a vaccine were available that protected against the strains of HPV that cause cancer would I have gotten it? You bet! Am I frightened for my life - yes and that's on a 24/7 basis.

    Merck's educational campaign was based on the fact that many women didn't know what HPV was or that it caused cervical cancer. Well, how many men and women don't know that HPV also causes head and neck cancer? Merck's educational campaign as I see it is glaringly missing the boat. If even one person might be spared what I've had to go through and the devastation of their lives, through an educational program that informs the public that HPV causes more than cervical cancer, then I say go for it; and Michael, thank you for what you do in the name of advocacy and keep on doing what you do.

    I think the most frustrating part at this point is that numerous meetings (Michael even traveled across the United States twice this past summer on Merck's behalf) and conversations with Merck regarding these very issues already occurred months ago and nothing ever happened.

    Merck's campaign is to "Tell Someone", but they don't seem to be "Telling Anyone" the whole story about HPV.

    [Ed. note: There are serious legal issues with which is it at present contending. The Merck staff with whom RRP ISA has talked all seem quite caring and compassionate; they are not unaware of the wider effects of HPV, but they don't control Merck's website. Merck should probably not be blamed for being overly gun shy at this time, although its refusal to properly educate people seems to us to reflect a pathological level of paranoia. Merck has subsequently changed the title of it's website from "Tell Someone" to "HPV.com."]