By Emily Ortman, SWHR Communications Director
As a cervical cancer survivor, Tamika Felder started a nonprofit organization that encourages and trains other survivors to tell their stories to increase disease awareness. “Every single story matters,” she says.
But many women with cancer associated with the human papillomavirus (HPV) — the most common sexually transmitted infection (STI) — are hesitant to speak up due to widespread stigma. Not only is their cancer linked to an STI, but many HPV-related cancers are in areas of the body considered “taboo” to talk about. HPV can cause cervical, vaginal, vulvar, anal, penile, and oropharyngeal cancers.
“This experience is extremely isolating,” said Sarah Nielsen, PhD, a vaginal cancer survivor. “It is difficult to share such intimate details about your life with people.”
At a recent virtual roundtable hosted by SWHR, Felder, Nielsen, and anal cancer patient advocate Michele Longabaugh shared their experiences with a diverse group of experts, who worked to identify gaps in research, clinical practice, policy, and education that must addressed to improve health outcomes for women with HPV-associated diseases.
Patient and Provider Education Gaps
Although almost all sexually active people contract HPV, public awareness around the virus is lacking. Most people do not know they have it and it usually resolves without causing any health problems. Moreover, stigma around HPV is pervasive and falls disproportionately on women due to the lack of viable HPV screening methods for men. Widespread education around HPV, the HPV vaccine, and screening options is greatly needed, the experts agreed.
Dr. Jenna Messman, a sexual health program coordinator at the University of Maryland, emphasized the importance of making public health messaging and educational materials digestible for the public and inclusive of sexual and gender minorities. “Representation matters — seeing yourself can make a difference with engagement and adherence to care,” she said.
Health care providers also need better training in how to address these topics with patients so they don’t inadvertently compound patient feelings of shame or embarrassment. “It only takes one person who isn’t well informed or who doesn’t really understand the impact of how they treat a patient for them to turn away,” Nielsen said. “And that could be deadly.”
Many providers are also not adequately trained to assess patients presenting with symptoms for vaginal, vulvar, anal, and oropharyngeal cancers to catch these diseases early on. Health care providers “do a very poor job of evaluating symptomatic patients” for anal cancer, said J. Michael Berry-Lawhorn, MD, an anal cancer specialist and co-director of HPV-related clinical studies at UCSF.
Vaccine Uptake
The best medical option is always disease prevention. Fortunately, the HPV vaccine prevents infection from nine HPV types, including the seven that cause more than 90% of HPV-associated cancers. The Centers for Disease Control and Prevention (CDC) recommends the series of two shots be given at ages 11-12 for both girls and boys. Even though the vaccine is proven to be safe and effective, vaccination rates in the U.S. remain low. In 2018, only 51.1% of U.S. adolescents were up-to-date on the HPV vaccination schedule.
Mona Saraiya, MD, a medical officer in the CDC’s Division of Cancer Prevention and Control’s Epidemiology and Applied Research Branch, noted that vaccination rates are lower in rural areas, where health care providers are less likely to recommend the vaccine and parents are more likely to decline when it’s offered. Additionally, vaccination rates are lower among boys and young men.
Although the purpose of the vaccine is cancer prevention, low vaccination rates may be partly due to the cultural stigma associated with giving adolescents a vaccine to prevent an STI. As a method of combating this stigma, the experts advocated for health care providers to frame vaccination as a public health issue instead of linking it to sexual behavior.
HPV and Cancer Screening
For adult women ages 30-65 years, the U.S. Preventive Services Task Force recommends screening for cervical cancer with a pap test every three years or HPV testing or co-testing every five years. Pap tests must be repeated more often than HPV tests as they are less effective at detecting precancer.
Most providers continue to use pap tests or co-testing though, as the field is transitioning to the primary HPV test. “It’s a matter of logistics and cost until we switch over and make sure that persons with a cervix have access to a primary HPV test,” said Debbie Saslow, PhD, managing director of HPV and GYN cancers at the American Cancer Society.
However, some providers are also concerned that the stigma around a positive HPV test is much greater than an abnormal pap smear, said Karen Smith-McCune, MD, PhD, former director of the UCSF/Mount Zion Dysplasia Clinic. “We really need to think about what are we doing when we do tell these women, ‘Well, you have HPV. There’s nothing we can do to get rid of it,’” she said.
When it comes to other HPV-related cancers, there are no clear screening guidelines or even screening options. “Guidance is limited on how to screen and whether screening is effective for preventing vaginal, vulvar, anal, and oropharyngeal cancers,” said Rebecca Perkins, MD, an associate professor of obstetrics and gynecology at Boston University School of Medicine. “We also need better understanding of how a diagnosis of an HPV-related cancer or precancer at one body site should affect monitoring for disease at other sites.”
Berry-Lawhorn noted that a limited number of specialists can perform a procedure known as high-resolution anoscopy to evaluate and treat anal precancer. However, it is not known how effective this is in actually preventing anal cancer.
Limited Treatment Options
Currently, there is no treatment for HPV. For HPV-related precancers, the majority of treatment options are surgical. In addition, the experts stressed that the effects of surgical treatments for cervical, vaginal, vulvar, and anal precancer on women’s long-term sexual health are not well understood.
Smith-McCune also noted that health care providers have been slow to incorporate women’s preferences into the management of their HPV. Better information and educational materials are needed to encourage and guide providers on shared decision-making with patients, she said.
A lack of understanding about how to discuss, diagnose, and treat HPV and its related diseases has prevented many individuals from receiving efficient and effective care. There is an urgent need for research innovation in this space, specifically to address the dearth of screening options and non-surgical treatments for most HPV-related cancers.
SWHR is committed to work that diminishes the stigma of HPV and prioritizes the health needs of women and men at risk for or diagnosed with HPV-related diseases that will ultimately lead to improved outcomes. Learn more about SWHR’s HPV expert roundtable here.