November 2013

New chapter leaders Cheryl Sloan Northern Illinois Chapter [email protected] Rose Thompson Richmond, Virginia rtho...

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New chapter leaders Cheryl Sloan Northern Illinois Chapter [email protected] Rose Thompson Richmond, Virginia

[email protected]

Online community Update We have several new chapter leaders and it is our hope to bring all of you together to help one another out through the forum on the chapter leader login page. There are also a variety of tools there that are available to you including event forms, business card applications, educational materials, etc. Several of you have requested that you have access to your chapter balances so that you may plan your events accordingly; you can now find those under Chapter Leader Tools. If there is anything else that we can do to make what you do easier please let us know! If you have any problems logging in or otherwise, please do not hesitate to contact Kelly at [email protected] or Rina at [email protected].

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NOVEMBER 2013

Chapter leader spotlight: Michele Appel Prigo, NCCC New York How long have you been with NCCC? I have been with the NCCC since 2009. What motivated you to become a chapter leader? My interest in HPV and cervical cancer started in a way that so many can relate to. After years of getting my annual Pap tests and gladly receiving normal results, there I was, in my early 30s and married, and learning that not only was I HPV+, but that it had somehow gone undetected and advanced to CIN III. I began doing research online and that’s when I came across the NCCC. But I also came across a lot of misinformation from other sources and I felt fortunate to have found the NCCC site so I could tell fact from fiction. Feeling fortunate enough that I had the NCCC as a reference point to tell fact from fiction motivated me to become a chapter leader and promote the NCCC’s valuable role in educating people on HPV and cervical cancer. I feel that being a chapter leader paves the way for me to speak out on HPV and cervical cancer across various media outlets and to a wide audience that includes care providers, lab technicians, companies working on advanced screening practices, and of course, to the public who are seeking knowledge on screening, protection, and treatment. Tell us about some of your chapter activities. 2013 was a huge year for me and the NYC chapter. I graduated and now have my Doctorate of Health Education from Columbia University’s Graduate School of Education. I partnered with Tamika and Friends and did two videos for their CervivorTV series, and was interviewed by Cosmopolitan continued on page 2

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magazine regarding the HPV vaccine. And I am happy to announce that we’ve experienced a huge uptick in interest from new folks looking to get involved and I foresee 2014 to be a great year for the chapter! What’s the most challenging thing in your chapter work? What’s the most satisfying? The most challenging aspect of the NYC chapter is keeping it cohesive. NYC, as I’m sure you can imagine, is a frenetic place with many competing organizations all clamoring for the same audience and same dollars. Yet the most satisfying thing about representing the NCCC in NYC is the many great opportunities within the medical and media forums to educate both the lay and professional communities. Where would you like to see NCCC go in the future? I would love to see the NCCC gain as much national attention and momentum as similar organizations. The market has yet to be saturated in teal and with the great senior leadership and the chapters across many states representing the NCCC, I think it’s possible. Like the other night, my husband and I were watching the news and they showed the White House bathed in pink light to signify Breast Cancer Awareness Month, and he said to me, “When are we going to see the White House bathed in teal?” And I said, “We’re working on it!” Anything else you’d like to add? Michele appears on an episode of CervivorTV, sharing her story I believe that for education to be successful, of HPV diagnosis. For more information on the Cervivor project, all the moving parts have to be addressed. visit www.cervivor.org It can’t just be about educating women and men on protection, screening, and transmission. Education has to be disseminated to care providers, lab technicians, and companies that are working on advanced screening tools. It’s just not enough for a patient to ask for a specific test or initiate dialogue on protection or transmission. The care provider also has to be versed in these subjects. Further, it’s important that lab technicians who are assigning diagnoses understand disease progression and the sneaky ways HPV can manifest. Also, it will benefit patients when lab technicians realize that it’s not just a specimen, but rather that specimen has loved ones, a life, dreams, and that accurate diagnoses are so important. And last, but not least, companies that are working to fine tune screening play an integral role in educating lab technicians, care providers, and patients. Advances today in screening have brought us past the yes/no value of declaring risk for cancer. We are so lucky that we can now know our level of risk. This is an enormous step forward and really allows us to look at test results in a more comprehensive way. Ultimately, we are not just a test result. We are wives, girlfriends, sisters, and mothers, who want and deserve to know our real risk for developing cervical cancer. And understanding our real risk comes from successful education that involves all the moving parts of screening and diagnosis.

January is approaching! As you are all aware – January is a big month for us! We have a number of resources available to you on the website including PSA’s, press releases, proclamations to send to your mayor, posters to download and more! (www.nccc-online.org/index.php/january) In addition, we are submitting a report to the Board of Directors about all of your January activities and the awesome work you’re doing! Please let us know (by filling out your event forms!) what you’re planning on doing to help spread the word about National Cervical Health Month.

recent news about HPV and Cervical Cancer Are HPV Vaccines Less Effective in African-American Women? Research finds that African-American women are less likely than white women to have the cancer-causing HPV types covered by vaccines currently on the market. Two HPV vaccines are available in the U.S. and throughout much of the world – Merck’s Gardasil and GlaxoSmithKline’s Cervarix- and both cover HPV 16 and 18, respectively, the two “high risk” HPV types found with about 70% of cervical cancers globally. A number of other “high risk” HPV types can cause cervical cancer, though, so women remain at risk (and should continue having Pap and HPV tests) after being vaccinated. This point was driven home in October, when Dr. Catherine Hoyo presented data at the International Conference on Frontiers in Cancer Prevention Research that indicates African-American women, compared to white women, are only half as likely to have HPV 16 and 18. Af-

rican-American women are disproportionately affected by cervical cancer, and are more likely to be diagnosed later when the disease is more difficult to manage. That HPV 16 and 18 is detected less often in African-American women might mean their risk for cervical cancer remains higher even after receiving HPV vaccines. Differences in the distribution of HPV types have been noted for years, across ethnic groups and in different regions of the world. This latest research offers additional proof of the need for vaccines that cover more HPV types: a number of these “second generation” vaccines are currently in clinical trials, one of which is being evaluated to cover nine different “high risk” types. Experts are quick to caution that African-American women should receive current HPV vaccines, as they remain at risk for cancers due to HPV 16 and 18 and will still benefit from the vaccines.

Share your contacts with us! We here at the NCCC are happy to send out mailings to your support community on your behalf! This can include information about upcoming events, community news, or a plea for volunteers. Just share all the email addresses you have collected over your tenure as chapter leader, and we will add it to our database and classify it under your state and share information as you continue to pursue your goal of cervical cancer awareness. We hope that doing this will help you communicate more easily with all of those people whose lives you have touched in one way or another over the years.