We need to pay more attention toward eliminating cervical cancer as a public health concern, not least because we already have the tools to end this cancer and resulting deaths. Yet, women and people with cervixes are still suffering from the disease due to multiple barriers to screening. As a result, we are seeing a steady decline in screening rates which consequently limit early detection of cervical cancer. If caught early, through regular screenings, cervical cancer is curable 92% of the time. 

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Across contexts, women (especially from marginalized backgrounds) face significant barriers to accessing cervical cancer screenings and related care, putting them at greater risk of death. Accordingly, the World Health Organization (WHO) has established eliminating cervical cancer as a global priority, urging accessible prevention and screenings for high-risk human papillomavirus (HPV) types that cause almost all cervical cancer. Likewise, the United States has committed to ending this disease with goals to increase screening engagement. 

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Improving screening engagement is especially salient in the United States, where estimates show that the full potential of up-to-date cervical cancer screenings could result in $6.5 trillion life-years gained – the largest life-year benefit of any screenable cancer. Here, self-collection for cervical cancer screening presents a promising approach to increasing screening engagement. 

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A Widespread Decline in Screening Rates for Cervical Cancer

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The United States is seeing steady decline in those who are up-to-date on their screenings (which was further exacerbated during the COVID-19 pandemic). Routine screening is critical because it can catch high-risk HPV types that are responsible for around 95% of cervical cancer cases. Although, not everyone who is infected with HPV will develop cervical cancer. There are various socioeconomic factors that impact a person’s risk for having an HPV infection progress into cervical cancer, including poverty, violence, and stress (we discuss this more in Part Two). 

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The Medicaid and CHIP Payment and Access Commission found that cervical screening participation is declining regardless of insurance status and income. In a study of individuals who held private insurance, Medicaid, and those who were uninsured, cervical screening rates fell consistently from 2005-2013. This decline across insurance status was consistent despite individuals’ income status (measured as being above or below 138% of the federal poverty line). As seen below, a more recent national survey conducted by the Centers for Disease Control and Prevention shows that cervical cancer screenings have been declining since 2000, with these patterns also holding across racial and ethnic groups.

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Much of this persistent decline is due to the barriers people face when it comes to cervical cancer screening. These barriers, like the decline in screening participation, are widespread across racial and ethnic groups. In one study about barriers, more than half of all racial and ethnic groups reported five or more barriers (70% of White women, 63% of Black women and 78% of Hispanic/Latina women). The study asked about a range of barriers, with the most commonly reported being constraints around insurance, cost, and time, as well as being afraid and not having a regular doctor who could do the screening. The figure below shows how frequently White, Black, and Hispanic/Latina women reported these barriers, illustrating widespread obstacles to cervical cancer screening.

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‍Unsurprisingly, the number of women overdue for their cervical cancer screening dramatically increased during COVID-19 pandemic, when clinic-based screenings were inaccessible due to the overwhelmed healthcare system and existing barriers were exacerbated. Where 14% of women were not up-to-date on their cervical screening in 2005, this increased to 23% overdue in 2019. In 2020, cervical screening rates further dropped by 94% due to the pandemic, the effects of which are still unfolding and demand close attention from healthcare providers.

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Current Trends in Cervical Cancer in the United States

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Although cervical cancer rates are highest in low-resourced settings, this disease continues to impact women in high-resourced settings as well. In terms of prevalence, incidence, and mortality, the National Cancer Institute estimates that in 2020 there were 296,981 women living with cervical cancer in the United States, with 2023 bringing 13,960 new cases and 4,310 deaths. Cervical cancer is not only the fourth most common cancer worldwide, but it most commonly affects younger women – of children who lose their mothers to cancer, 20% lose them to cervical cancer. 

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‍Current Trends by Age: The American Cancer Society underscores that progress is lacking when it comes to preventing cervical cancer and reducing resulting mortality in young women, especially given that it is one of the most preventable cancers and highly treatable if detected early. Since 2019, cases have been on the rise in the United States, moving cervical cancer up to being the third most common cancer death among young women in the United States. Cervical cancer is most frequently diagnosed among women who are between 35-44 years of age, and remains the second leading cause of cancer death in women aged 20-39 years. We also know that incidence rates (new cases of cervical cancer) have increased 1-2% annually for those aged 30-44 years. Given this evidence, there is opportunity to affect progress among younger patients at risk of cervical cancer.

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Current Trends by Race and Ethnicity: Non-Hispanic Black and Hispanic women experience higher rates of cervical cancer compared to non-Hispanic White women. Estimates from 2016-2020 show that for every White woman diagnosed with cervical cancer, almost a third more Black women are diagnosed each year. And, compared to White women, Hispanic women are diagnosed at almost double the rate each year. A long-term analysis in the U.S. also showed that Black women experienced higher rates of late stage cervical cancer compared to White women. 

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However, White women continue to have a higher annual increase in late stage cervical cancer incidence. In the last 18 years, there has been an overall 1.3% annual increase in distant stage IV cervical cancer cases, with White women aged 40-44  in the U.S. South experiencing the highest rise (4.5% annually). Nationwide, white women also missed their cervical cancer screenings at almost double the rate compared to Black women. 

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Below, you can see how each racial and ethnic group differs from the average rate of new cervical cancer cases (per 100,000 women). According to this data, Hispanic women experience the highest new case rates, followed by women who identify as being Black or American Indian/Alaska Native. White women experience the lowest rates of new cervical cancer cases overall, compared to the average across all races and ethnic groups.

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Looking Ahead

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Critical to eliminating cervical cancer as a public health concern is improving access and participation in screening. We now have the tools to offer very accurate and accessible screening through primary HPV testing and (hopefully, soon) at-home self-collection options. HPV self-collection could be groundbreaking in engaging consistent cervical cancer screening and preventing deaths, especially among those at highest risk

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In Part Two we will cover the current recommendations for cervical cancer screening, and delve into primary HPV testing as an effective screening method. We’ll get into the research on primary HPV testing and discuss its role in enabling self-collection. 

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