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RRP ISA Survey Results


    FAQ (continued)

    FAQ (continued)

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    How important is finding a physician who uses Video Stroboscopy?

    Excellent visualization of papillomas can be made by an experienced surgeon with a simple mirror (indirect laryngoscopy). Video stroboscopy is done either with a rigid tube inserted through the mouth or with a fiber optic tune inserted through the nose and out into the airway. It allows the physician to see the vocal cords vibrating, which is sometimes essential in diagnosing the underlying reason for hoarseness (vocal dysphonia). It also allows physicians to take photographs. Comparing photographs of the same area at different times can be very useful in assessing growth patterns and how aggressive one’s disease is.

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    Advocacy

    Why is Advocacy an integral part of RRP ISA’s [Information, Support and Advocacy] name?

    Because it’s such an integral part in supporting patients with RRP. Patients frequently need someone to communicate on their behalf with their physicians, nurses, families, insurance companies, and sometimes even with attorneys. It is not unusual for RRP ISA to spend 15-20 hours a week providing such advocacy. Our willingness to go the extra mile in this regard is one of the things that distinguishes RRP ISA from most other patient support organizations.

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    What is RRP position on Gardasil (Merck’s new preventative HPV vaccine)?

    Dr. Keerti Shah is a respected HPV/RRP molecular biologist at Johns Hopkins. In May 2006, he wrote:

    The vaccine [Gardasil] will also prevent a rare but serious HPV-related disease called respiratory papillomatosis. The illness causes benign tumors to form in the respiratory tract. These tumors are not malignant, but some children may develop the disease at the age of 1-2 years and require hundreds of surgeries to keep the airway open. Mothers who have genital warts can transmit the disease to their children during birth. As I mentioned, the Gardasil™ vaccine developed by Merck also provides protection against HPV types 6 and 11, which cause genital warts. By preventing genital warts, the chance of spreading the virus from mother to child would be practically zero."

    RRP ISA testified on Gardasil at the Advisory Committee on Immunization Practices (ACIP) meeting in June 2006 in Atlanta. We felt that it was important to note that HPV isn't merely a cervical cancer disease but also causes RRP and perhaps up to of all head and neck cancers (Johns Hopkins). We referred to Dr. Keerti Shah’s comments stating that Gardasil will prevent RRP and we recommended broad-based approval of Gardasil to prevent new infections. We were joined by a number of other high profile, non-profit groups who unanimously urged broad based approval.

    We also urged approval for males, since the ACIP's recommendations will also drive insurance reimbursement. When the public testimony presentation testimony was over, ACIP issued broadbased recommendations for females but not for males, since widespread testing on males and RRP has not been done. This was disappointing but understandable. The testing on males should commence soon. In July 2006, Merck called together a group of eleven RRP experts from all over the world, including RRP ISA and nine physicians/researchers, to learn more about RRP and to try to figure out how to best test for prevention efficacy.

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    (3) What can I do if my insurance won’t pay for the treatment that my physician has recommended?

    RRP ISA may be able to help patients if their benefits are denied, one example being RRP ISA’s success in getting MediCal to reverse its initial decision to refuse to allow reimbursement for treatment with the Mumps/MMR vaccine. [In another advocacy initiative, RRP ISA has gone on to share some very serious concerns about the potential safety risks relative to this treatment approach, and we are preparing a formal complaint to the Colorado State Board of Medical Examiners on one physician’s handling of this issue. Before these concerns reached a peak, however—i.e., before we verified that patients were being pressured to use MMR vaccine in the absence of full informed consent—we successfully advocated for insurance reimbursement.]

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    RRP ISA

    What does RRP ISA mean?

    RRP is an acronym for Recurrent Respiratory Papillomatosis. The ISA in our organizational name stands for Information, Support and Advocacy. RRP ISA is a non-profit, tax exempt 501(c)(3) organization that has served the RRP community since 1998. Our mission is to better the lives of RRP patients and families throughout the world and to network the RRP treatment and research communities.

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    Other

    What does the larynx look like? Anatomy? Physiology?

    Pictures and description from Johns Hopkins Center for Laryngeal and Voice Disorders.

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