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Interview with National Cervical Cancer Coalition Founder Alan Kaye

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In 2011, ASHA and the National Cervical Cancer Coalition (NCCC), an organization that specializes in education and support for survivors of cervical cancer, merged. NCCC founder Alan Kaye shares his thoughts on how to best support women (and their families) in dealing with cervical cancer.

NCCC focuses strongly on survivors. What type of support and information do cervical cancer survivors need the most?
When there is a potential for a cancer diagnosis or a person has received a cancer diagnosis, there are feelings of being so lonely and isolated. And when that cancer has a stigma associated with it as cervical cancer does, these feeling s are heightened. NCCC focuses on women, family members and friends right at this most challenging time when a cancer diagnosis is given or cancer treatments are just getting started. The emotional support, along with accurate health information, options for second opinions, and talking or emailing with other survivors are key factors NCCC helps patients and families with during this time.

Alan KayeHow does stigma impact cervical cancer patients and survivors?
Wow, the stigma continues to be a challenge with cervical cancer, vulva, vaginal and vulvar cancers and now some penile and head & neck cancers, too. As we continue to find out more about virus-associated cancers (VACs), we are seeing that some of the viruses may be associated with a sexually transmitted infection (STI) like HPV. At times, in many families, when they hear that a cervical cancer may be due to a STI, there is a feeling of shame, isolation and a sense a person did something wrong. The fact is 80% of all women and men would have tested positive for the HPV virus at least one time in their life by age 50! The HPV virus is common such as the common cold. There should be no shame with having, or having had, the HPV virus.

How do we best address stigma?
The best way to address the stigma is to have the women and men that may have a HPV-associated cancer speak out about the virus, how common HPV is and how a diagnosis can make a person feel ashamed. The virus and its cancers know no ethnicity, political party or region. These cancers can impact everyone, anywhere they may be. Each time a new cancer patient or family member/caregiver speaks out about the stigma, it helps to shatter stigma a bit more. Using evidence-based science and knowledge to speak out with is paramount to reducing the stigma.

What NCCC accomplishment(s) bring you the most pride?
We are proud of both the programs we initiated and the events we worked on to reduce the burden of cervical cancer and HPV, both nationwide and on a global level. We are especially proud of these programs: (1) our PhonePals system linking patients with the same cancer diagnosis to talk with one another; (2) the cervical cancer quilts that have traveled the country to help put a personal face on the fight against HPV and cervical cancer; (3) our online INSPIRE community which allows cancer patients to talk with one another through the Internet; (4) our electronic newsletter that provides timely information on new events on cervical cancer and HPV; (5) our resource center that sends out thousands of pamphlets on cervical cancer annually, (6) our fundraising and chapter development that has created 25 NCCC chapters throughout the United States and (7) our Global Initiative Against HPV & Cervical Cancer (GIAHC) www.GIAHC.org. (8) and our NCCC award-winning web site: www.nccc-online.org and our amazing three annual conferences (and videos and Public Service Announcements) that brought together women nationwide to listen and learn about cervical cancer, HPV and to speak out in their communities.

Even with these wonderful accomplishments, our number one accomplishment is our grassroots, cancer patient focus. It is the day after day, week after week, month after month of talking with each cancer patient and their family as they battle their cancer or precancer that is the most rewarding and helps impact the quality of life when a person hers those words: It's cancer! We are excited to be merging the NCCC and its amazing activities with ASHA. With ASHA's resources and NCCC's ability to grow in helping women and men find out more about prevention through cancer screening and vaccines, we are confident we will further help to reduce the burden of these HPV-associated cancers throughout the United States and globally.