On September 7, the House Government Reform Subcommittee on Criminal Justice, Drug Policy and Human Resources heard testimony concerning efforts in the prevention, early detection, and treatment of gynecologic cancers.
Noting that September is Gynecologic Cancer Awareness Month and National Ovarian Cancer Awareness Month, Chair Mark Souder (R-IN) said that “according to the American Cancer Society, over 79,000 women are diagnosed every year with cancers affecting the reproductive organs. If diagnosed in the early stages, the survivability rate is as high as 95%. Nonetheless, this year alone, more than 27,000 women will die from a gynecologic cancer.”
Focusing his comments on cervical cancer, Rep. Souder explained that “the primary cause of virtually all cervical cancers is human papillomavirus (HPV), which is transmitted through sexual contact…Although federal agencies are working on vaccines developed to prevent HPV infection, current proposed vaccines do not address all strains of HPV. Moreover, the FDA [Food and Drug Administration] has yet to comply with P.L. 106-554, signed by President Clinton in 2000, requiring that condoms be accurately labeled to reflect the fact that condoms do not protect from HPV infections.” He added, “It is inexcusable that federal agencies have yet to comply with a law passed more than five years ago, and in the meantime, thousands of women continue to die from this preventable disease. The cost to comply with the law requiring accurate condom labeling is quite low. The benefit is measured in terms of women’s lives.”
Edward Trimble, head of surgery for the Division of Cancer Treatment and Diagnosis at the National Cancer Institute (NCI), summarized NCI activities in the areas of cervical, ovarian, and endometrial or uterine cancer. NCI Director Andrew von Eschenbach presented similar testimony on May 12 before the Senate Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (see The Source, 5/13/05).
Chief of Public Health Practice for the Centers for Disease Control and Prevention (CDC) Ed Thompson detailed the CDC’s efforts in cancer prevention. He explained that the National Breast and Cervical Cancer Early Detection Program (NBCCEDP) “helps low-income, uninsured, and under-served women gain access to lifesaving screening programs for early detection of breast and cervical cancers. The national program currently provides screening support in all 50 States, the District of Columbia, 4 U.S. Territories, and 13 Tribes and Tribal organizations. Since 1991, the NBCCEDP has provided more than 2.9 million Pap tests and detected invasive cancers in more than 1,500 women.” He also highlighted the National Comprehensive Cancer Control Program, which provides states and localities with the support to develop comprehensive cancer control plans, and the National Program of Cancer Registries, which collects data for all cancers by race and ethnicity.
With regard to cervical cancer, Dr. Thompson said that the CDC “supports an education and awareness project through the National Organizations Strategies for Prevention, Early Detection, or Survivorship of Cancer in Underserved Populations program. The project’s goal is to reduce cervical cancer incidence and mortality among working women by promoting increased cervical screening and annual follow-up for women in unions.” He also noted that the National Cervical Cancer Public Education Campaign “encourages women to take action and get screened to prevent cervical cancer. Led by the Gynecologic Cancer Foundation and supported by partners that include the CDC, NCI, and the American Cancer Society, the educational campaign offers women and providers information about the causes of cervical cancer, as well as information about prevention and early detection.”
Pointing out that women need to have more information about their risk of developing a gynecologic cancer, Dr. Thompson stated, “One way to improve access to good healthcare for women is through education and awareness campaigns for gynecologic cancer designed to increase knowledge and change behaviors. Any gynecologic cancer campaign should be population based, with an emphasis on underserved women and their healthcare providers. The campaigns should employ multiple strategies to reach all women in need and they should be evaluated and tested for effectiveness. Then, the most effective strategies should be widely disseminated through a comprehensive national campaign.”
Mark Rosenfeld, a scientist and researcher in Draper, Utah, said that cervical cancer “is a disease that strikes about 500,000 women worldwide annually, and 300,000 die each year. On a global basis, it is the most frequent female cancer in developing nations. In the United States, between 250,000 and 1 million women each year are annually diagnosed with cervical dysplasia [abnormal growth].” Explaining that women in the United States have a higher survival rate because Pap tests are more widely available, Dr. Rosenfeld noted that the test has “deficiencies,” including “a 20% chance of being a false negative.” He added, “The poor sensitivity of a Pap test is compensated by frequent repetition to improve detection. In other words, the American cervical cancer screening system consists of doing Pap tests again and again with about 60 million done in the United States each year. Repeat Pap testing is costly, burdensome, and time-consuming, as well as needing highly trained specialists to successfully perform [the test]. This makes Pap testing rare or non-existent outside of North America, Western Europe and Japan.” Pointing to the relationship between cervical cancer and HPV, Dr. Rosenfeld stated, “In extrapolating to the more than 60 million Pap smears done each year in the United States, an HPV-related test on equivocal Pap tests, using current FDA-approved but still inefficient technology, portends an annual cost savings of at least $150 million from just eliminating repeat visits for another Pap test.”
Beth Karlan, president of the Society of Gynecologic Oncologists, said that many women are uninformed about the symptoms related to gynecologic cancer, which has led to late detection and more deaths. She expressed her support for the Gynecologic Cancer Education and Awareness Act (H.R. 1245) or “Johanna’s Law,” which was introduced by Rep. Darrell Issa (R-CA). Dr. Karlan stated that “under Johanna’s Law, the Department of Health and Human Services (HHS) would conduct public education awareness programs to explain the facts about the early warning signs of gynecologic cancers to the women of this country. The activities HHS would undertake would include various forms of communication (written materials, public service announcements and more), as well as outreach in cooperation with nonprofit organizations. Johanna’s Law would entail modest levels of funding ($15 million annually), but these monies would be significant in our fight to end cancer as a threat to women.” She added, “I cannot over-stress the importance of arming women with the basic facts about these cancers. It is our front line defense in the battle against these killers of women.”
The panel also heard testimony from Kolleen Stacey, an ovarian cancer survivor, and Sheryl Silver, a freelance writer and gynecologic cancer advocate. Ms. Silver’s sister, Johanna, died from ovarian cancer in 2000 and is the inspiration for Johanna’s Law.
