What is the National Cervical Cancer Coalition (NCCC)?
The National Cervical Cancer Coalition (NCCC) founded in 1996, is a grassroots nonprofit organization dedicated to serving women with, or at risk for, cervical cancer and HPV disease.
Cervical Cancer Screening Saves Lives, yet...
- 11% of United States women report that they do not have their Pap test screenings
- In the United States, About 10,000 women are diagnosed with cervical cancer each year and about 3,700 women die in the USA each year from this disease.
- Women in developing countries account for about 85 percent of both the yearly cases of cervical cancer (estimated at 473,000 cases worldwide) and the yearly deaths from cervical cancer (estimated at 253,500 deaths worldwide).
- In the majority of developing countries, cervical cancer remains the number-one cause of cancer-related deaths among women.
- A woman who does not have her three shot prevention vaccine and her regular Pap test screen and HPV test when recommended, significantly increases her chances of developing cervical cancer.
- High-Risk HPV Types are directly related to cervical cancer, yet many women are unaware of what HPV is or the relationship it has to cervical cancer.
Get your regular Pap test, even if you have received the HPV/cervical cancer vaccine
Cervical Cancer/HPV vaccine has been approved by the FDA. However, phone calls we receive on the NCCC Hotline indicate that some women are still confused about what to do with regard to their regular Pap test if they have been vaccinated. Some women, maybe you, have thought that a Pap test is no longer necessary. It is important to restate the facts even with the vaccine.
Even if a women has had the HPV/cervical cancer vaccine, she will continue to require her regular cervical cancer screen by the Pap test and HPV test when recommended. At this time, the vaccine(s) only protects against 70-80% of the potential cervical cancer cases. Since the 1940’s, The Pap test has reduced cervical cancer rates in the United States by more then 70%. The Pap Test, like the one you receive regularly, is the single most effective cancer screen in the history of medicine. Remember to have your regular Pap test and HPV test when recommended. Early detection saves lives.
- Maintain an on-going support system for women, family members and friends facing issues related to cervical cancer, HPV and other HPV cancers.
- Continue growing its existing recognition in the United States and ongoing recognition worldwide as a primary clinical and public education resource clearinghouse on cervical cancer, HPV related topics and other related cancers;
- Advocate for patient access to quality care and regular testing and vaccination to prevent cervical cancer/HPV disease;
- Reduce the stigma associated with cervical cancer and HPV disease.
- Develop high quality professional and public education programs to inform about current trends in access, technology, research or other issues pertinent to the field;
- Develop and engage constituents to further the education process. Constituents include women with cancer and HPV disease and their families, professionals, the public, health-care institutions, public policymakers and the media;
- Identify constituent/membership needs and programmatic gaps to guide organizational development and fundraising;
- Develop organizational partnerships to further NCCC mission and goals.
- Continue the NCCC annual conference for women battling cervical cancer and HPV disease.
Over 4,500 members have now joined the NCCC; Members include women and family members/caregivers/friends, women's groups, cytotechnologists, pathologists, clinicians, laboratories, technology companies, cancer researchers, hospitals, organizations providing cervical cancer screening programs, and other related associations.
Members live throughout the world. Of the 4,500 members the NCCC has, 3,000 are located within the United States and Canada. The NCCC membership encourages the NCCC to educate the public about cervical cancer prevention, new detection and treatment options including prevention with vaccines and the importance of regular Pap test screening and HPV testing when recommended.
Membership is FREE. Sign up through the Membership page.
History of how the NCCC first begin?
The NCCC initially grew out of the need for quality cervical cancer screening for undeserved uninsured women and the need to provide information to women battling personal issues related to their cervical cancer.
Back in 1996 Mrs. Randi Kaye was the co-owner of a women’s health niche laboratory with her husband, Alan. As co-owner of the niche women’s health lab, Randi and Alan were concerned for women who had cervical cancer/HPV disease and who felt isolated and unsafe. Randi and Alan desired to give back to the community and began the National Cervical Cancer Coalition (NCCC). As soon as the NCCC began its operation, it became apparent to Randi and Alan that there was a tremendous unmet need for a grass-roots resource group to help women and caregivers that were searching for information on cervical cancer, HPV, support services and advocacy.
In 1998 Randi, a non smoker was diagnosed with Lung cancer. Randi’s husband, Alan became Randi’s primary caregiver and together they battled issues related to Cancer such as access to accurate information, chemotherapy, radiation, coping techniques, Clinical Trials, nutrition, emotional health, pain management, related side-effects, cancer funding and Cancer issues while raising children. Randi and Alan’s children (Joshua and Andrew) were ages 9 and 12 when Randi was diagnosed with cancer in June, 1998. Randi died June, 2001. Randi never gave up HOPE and out-lived every clinician’s expectations. Randi would say; “No person is a statistic.” Randi went on living a quality life day after day, week after week, month after month and was a true hero to those whose lives she touched. While in the midst of her Cancer battle, Randi and her husband, Alan, went to Washington DC for “The MARCH” on Washington in 1999 to raise awareness of the need for additional (NCI) funding to fight The War on Cancer!
What efforts does NCCC undertake in its outreach, prevention and education projects for the public and for clinicians?
Examples of NCCC outreach, prevention and education projects include:
- Development of the nation’s first Cervical Cancer Phone Lifeline (Hotline) for women and family members;
- Development of the NCCC Phone Pals system matching women together for support who are battling cervical cancer and HPV disease;
- The Cervical cancer/HPV Quilts project, which travels throughout the United States (and worldwide) to help place a personal face in the battle against cervical cancer and HPV disease;
- The nation’s Free Pap Test Day, held the second Friday in January for women who have not had a Pap test in three years. The FREE Pap test/HPV Test day is held in January which is Cervical Health Awareness Month;
- Funding source for educational material on cervical cancer provided through the SGO/GCF and educational material funding offered through ARHP;
- Co-sponsorship of four medical conferences, providing CME credits with the National Ovarian Cancer Coalition (NOCC) on gynecologic cancers;
- Co-sponsorship of education research conferences on cervical cancer and all cancers, with organizations such as the National Cancer Institute (NCI) and the Centers For Disease, Control and Prevention (CDC);
- NCCC’s award winning web site www.nccc-online.org;
- Several NCCC Medical Advisory Panel members are active in Cervical Cancer, HPV and Cancer research issues.
- Development of local state affiliates throughout the country;
- Co-sponsorship of fundraising conferences on cervical cancer issues in Malawi, Africa
- Prevention education fundraisers;
- Advocate for women’s cervical cancer issues and all cancers with the National Cancer Institute (NCI). The NCCC Chair is a member of the NCI Director’s Consumer Liaison Group (DCLG).
- Provided testimony on new technologies and research;
- HEALTH NEWS section on NCCC web site focusing in on cervical cancer/HPV/Cancer news/advocacy/education;
- Developed the ClinicaHealth List server for a safe chat room online;
- Began the NCCC national conference bringing together women battling cervical cancer and HPV disease to receive information on cervical cancer and HPV disease and to speak out on eliminating the stigma that seems to be associated with cervical cancer and HPV disease.
Very important: Remember, the Pap test is a screening test. A single Pap test is not a diagnostic test. It is the ongoing repetition of routine cervical cancer screening that helps to increase the accuracy of the Pap test. How do you join the NCCC? You can join right now by filling out the online registration form. Coalition Membership is free.