Delivering Human Papillomavirus Testing to the Public: One Patient Advocate's Perspective

I was invited to the College of American Pathologists Strategic Science Series Conference “HPV Testing: Are You Ready for a New Era in Cervical Cancer Screening?” to provide a patient advocate perspective to the human papillomavirus (HPV) testing discussion. I have been involved with cancer policy issues for several years and have worked to promote screening for colorectal cancer on a national and state level. In November 2001, after a long and regular history of normal Papanicolaou (Pap) test results, I was diagnosed with stage 1b cervical adenocarcinoma. I was shocked, as most women in my situation would be. After all, cervical cancer is fully preventable through screening by regular Pap tests—isn't it?

After researching my diagnosis, I learned that:

• Pap tests have a high false-negative rate;

• some forms of cervical cancer are rarely discovered through Pap tests; and

• most, if not all, cervical cancer is caused by HPV, a very common sexually transmitted disease that can be detected by a simple test.

While anecdotal, my personal experience shows that even a highly aware and well-informed “professional cancer advocate” can be unaware of these established medical facts.

The American public has high expectations of cancer screenings. Katie Couric's campaign to promote colorectal cancer screening via colonoscopy has greatly increased the public demand for colonoscopies, a highly invasive and expensive procedure, largely because the perceived benefit is great—“if I have a colonoscopy, I am safe from colorectal cancer.” Mammograms are a routine part of many women's annual health care, in spite of the controversy surrounding their efficacy. While public behavior is impossible to foresee, this history suggests that American women will flock to a screening test perceived to be a more accurate than the current norm.

Fortunately, strong evidence predicts that HPV testing will benefit both American women and the medical system. Women will have a more accurate picture of their risk for cervical cancer. Appropriate HPV testing can free up limited colposcopy resources and can help direct follow-up after colposcopy or treatment. To reap the full benefit of HPV testing, that is, benefits both to the women being screened and to the medical system, a systematic public and provider education effort should be undertaken. Some of the components of this type of effort might include:

• guidelines that are widely (although not necessarily universally) endorsed by professional organizations and insurers;

• clear and simple public education material with appropriate cultural tailoring;

• strong public awareness campaigns, perhaps targeting Cervical Cancer Awareness Month (January); and

• partnerships to develop and deliver information, perhaps modeled after the National Colorectal Cancer Roundtable.1 Potential partnerships could involve both public and private organizations, such as the Centers for Disease Control and Prevention, professional health organizations, patient advocacy groups, insurers, and state departments of health.

In addition, lessons learned in the acquired immunodeficiency syndrome communities can help with development of cervical cancer screening messages that de-emphasize the sexually transmitted aspect of HPV infection. The conversation must stay focused on preventing cervical cancer as opposed to dissecting past sexual behavior. At the same time, diagnosis of a sexually transmitted disease will generate concern and questions, and availability of accurate, nonjudgmental information will be important.

Leadership is a key ingredient in a successful public health educational effort. Strong leadership by a credible entity can maintain focus on development and delivery of appropriate messages to desired audiences. Leadership cannot promote (or appear to promote) an industry agenda; to this end, funding from many sources and involvement from the advocacy and/or professional communities will be important. In addition, strong leadership can ensure that ongoing research findings are communicated clearly and effectively to the public and providers.

In summary, a clear message and strong leadership will help move appropriate HPV testing into mainstream public health.