Cervical cancer stigma – A silent barrier to the elimination of cervical cancer

Abstract

Despite being a preventable disease, cervical cancer continues to be a leading cause of death among women globally. In 2022, there were an estimated 660,000 new cases and 350,000 deaths globally.¹ Women living with social inequities, particularly those residing in low- and middle-income countries, face the highest burdens of disease.^{2, 3} In May 2018, the World Health Organization (WHO) Director General announced a global call for action to eliminate cervical cancer, urging nations to target and maintain an incidence rate below 4 per 100,000 women. To achieve this goal, strategic targets were established under the “90-70-90” framework: vaccination (90% of girls fully vaccinated with the human papillomavirus [HPV] vaccine by the age of 15 years), screening (70% of women screened using a high-performance test by the age of 35 years, and again by the age of 45 years), and treatment (90% of women with precancer treated and 90% of women with invasive cancer managed).⁴ These objectives rest on the estimate that if each country met the 90-70-90 targets by 2030, cervical cancer could be eliminated within the next century.⁵

Stigma, a powerful social process involving negative labeling and stereotyping of certain human characteristics as socially undesirable, remains a significant but often overlooked barrier to cervical cancer prevention efforts.⁶ Although the understanding that the HPV infection acquired through sexual contact was the cause of cervical cancer was a major scientific breakthrough, this discovery also linked stigma surrounding the female reproductive tract, sexual contact, and promiscuity to cancer prevention efforts.^7-10 Cancer stigma is being increasingly recognized as an issue to be addressed in global cancer control efforts.^{10, 11} Addressing challenges specific to cervical cancer stigma can potentially provide an opportunity to enhance cancer control efforts.

The origins of the word stigma can be traced to the classical Greek, where the term was used to describe the branding of outcast groups as a permanent mark of their status. Stigma lowers an individual’s status in society by differentiating those who are viewed to be normal from those who are different. This process results in social inequality, marking the boundaries that define outsiders, and labeling “us” versus “them.”^{6, 12-14} Cultural, social norms drive and facilitate the resultant power dynamics that include isolation, status loss, and discrimination.^{6, 15, 16} As a harmful influence on behavior, stigma serves to reinforce inequities by impeding access to health care resources.¹⁷

Cancer stigma can be conceptualized using an eco-social multilevel framework, categorizing the manifestations on individual, interpersonal, community, and societal levels (Figure 1).^{11, 16} At the individual level, stigma specific to cancer is primarily related fear of social judgment, self-blame, embarrassment, and shame, which can result in avoidance of education and health care services.^{8-10, 18} This can vary by disease sites, with patients with lung cancer, for example, more likely report stigma related to real or perceived tobacco use.¹⁹ Relationships and social networks, play a crucial role in perpetuating stigma at the interpersonal level as they are deeply rooted in and organized around cultural, social, and religious beliefs.²⁰ The consequences of cancer on social status as well as fears around disability and death vary greatly across different communities.^{11, 16, 20} Community norms and cultural practices further shape attitudes and behaviors, and factors such as media portrayals and public health policies can either reinforce or mitigate stigma.^{16, 21}

Multiple factors influence the stigma specific to cervical cancer. Unlike other malignancies, cervical cancer is often labeled as a women's health issue. Women's health has historically received less attention in biomedical research, resulting in a lack of comprehensive understanding and resources dedicated to conditions primarily or predominantly affecting women.^{3, 22, 23} Resultant gaps in knowledge and treatment options contribute to the insufficient focus on cervical cancer stigma.^{3, 22} Stigma related to sexually transmitted infection has been described as a barrier to prevention and treatment and are particularly amplified in the setting of HIV.^{8, 24-26} In women, this stigma additionally includes a violation of widely accepted roles that promote sexual purity and vilify promiscuity.^{10, 25, 27, 28} For women, stigma can extend to fear of loss of femininity because of loss of reproductive capacity, which could lead to spousal abandonment and financial insecurity.^{10, 22, 27} The disproportionate burden of cervical cancer on women of lower socioeconomic status amplifies the stigma associated with these other factors.^{3, 29}

Stigma has impeded cervical cancer control by deprioritizing the implementation of evidence-based management across the cancer continuum.^{6, 7, 10} The influence of cervical cancer stigma varies from prevention and screening, to diagnosis, treatment, and survivorship, presenting unique challenges distinct from the stigma associated with nonmalignant diseases such as HIV or obesity.³⁰ At the prevention stage, it is important to consider not only the prevention target population, majorly adolescent, but also the health decision makers, mostly parents, whose vaccine hesitancy or negative perceptions toward cervical cancer can influence their children’s HPV vaccination. Stigma has been recognized as a significant barrier to vaccination.^{8, 27} Endorsement of social belief in the importance of maintaining sexual purity has been associated with decreased HPV vaccination intention in US college-aged women.²⁸ Feelings of shame or fear judgment from families or communities can lead to health care avoidance, which may prevent screening and lead to delays in early detection.^{8, 10, 31} That cervical cancer is preventable can add to the stigmatization around a diagnosis through the implication of a failure of self-care of through screening.^{20, 27} Provision of treatment for invasive disease may involve stigma related to HPV as a sexually transmitted infection but also with cancer survivorship stigma, such as misconceptions about prognosis or self-blame.^{8, 32} Significant stigma related to HPV has been identified even among educated health care workers.³³ This variability complicates efforts to provide consistent support and educate, necessitating interventions at each phase of the cancer journey to effectively combat stigma and improve outcomes for those affected.

Cervical cancer stigma can hinder educational efforts, disrupt communication, and ultimately affect funding and support for cervical cancer research. The total National Institutes of Health (NIH) stigma portfolio in fiscal year (FY) 2019 was estimated to be $100 million USD.³⁴ A recent estimate of the research investment on cervical cancer stigma between 2019 and 2023 identified $6.8 million in funding. Most of these grants involved international collaboration or focused on US-based minority communities.³⁵ The opportunity exists for future research to comprehensively explore the influence of stigma on cervical cancer outcomes across the cancer continuum and among diverse populations.

Cervical cancer elimination is a goal prioritized by WHO, and subsequently cervical cancer stigma is of significant global concern. However, addressing cervical cancer stigma globally presents a complex challenge that requires both a broad, collective effort, and a precision approach tailored to specific contexts. Efforts are needed to raise awareness and foster a unified front against stigma, but the nuanced needs of individual communities must also be considered. Although stigma is a universal experience, a precision approach considers local beliefs, health care infrastructure, and educational levels requires resources, cultural competence, and collaboration with local stakeholders.²⁷ In limited-resource settings, where cervical cancer is most common, identification of these components is significantly more challenging.

Changing social dynamics and shifts in public attitudes and behaviors that influence cervical cancer stigma may not be captured by traditional research methods and approaches that typically involve long timelines for data collection, analysis, and publication.^{36, 37} This lag in research responsiveness can hinder the timely development and implementation of effective interventions. Innovative research methodologies, including real-time data analysis, community-based participatory research, and the use of digital tools, are needed to better understand and address the fluid nature of societal stigma. By adopting more agile and responsive research techniques, public health initiatives can stay relevant and impactful in the fight against cervical cancer stigma.

A strategic approach to destigmatizing cervical cancer necessitates global, coordinated efforts. WHO has implemented an effective the strategic framework focused on HPV vaccination, screening, and treatment that acknowledges cancer stigma.⁴ However, given the unique aspects of stigma impeding cervical cancer control, additional emphasis is warranted.

Insights can be gleaned from other fields such as HIV, other cancer disease sites, substance use disorders, and mental health. For example, the NIH, has designated prevention and reduction of stigma as a critical component decreasing the global burden of HIV, prioritizing cross-cutting research on stigma within its HIV research portfolio. Between FY15 and FY19, this explicit interest led to a doubling of the NIH HIV-funded stigma projects to 105 projects (from 51) and a $40 million USD investment.³⁴ In September 2022, the US National Cancer Institute’s (NCI) held a multidisciplinary international Global Cancer Stigma Research Workshop, which highlighted research on the intersection of cancer and stigma.¹¹ The National Institute on Drug Abuse, the National Institute of Mental Health, and National Institute of Alcohol Abuse have disseminated recommendations for the use of person-centered language to counter the effects of stigmatizing terminology on efforts to reduce the burden of substance use and mental health disorders.³⁸ Similar efforts in health communication and cultural sensitivity, specifically addressing cervical cancer stigma, could help raise awareness, encourage research in this area, and catalyze the development of effective interventions.

We have emphasized the importance of innovative approaches to addressing cervical cancer stigma as a social phenomenon. Multidisciplinary approaches incorporating fields such as sociology, communications, and marketing are needed.³⁹ Education on addressing stigma in clinical settings for health care providers and family members can enhance the delivery of equitable, culturally sensitive, and compassionate care. Additionally, leveraging social media platforms for data collection and intervention dissemination offers valuable tools to capture trends and facilitate action-oriented solutions to reduce stigma.^40-42

In July 2024, the Asia-Oceania Research Organization in Genital Infection and Neoplasm held a session on cervical cancer stigma, launching a social media campaign to destigmatize cervical cancer stigma. This campaign (Figure 2) allowed for flexible participation and indirect messaging and was well-received by the meeting attendees, most of whom were researchers and healthcare professionals in the cervical cancer field.⁴³ By integrating innovative approaches, researchers can better understand and address the root causes of cervical cancer stigma, ultimately leading to more effective and timely interventions that drive systemic change.

In conclusion, cervical cancer stigma represents a silent yet pervasive barrier to the elimination of cervical cancer. The impact of stigma influences women at risk for and living with cervical cancer across the globe, regardless of geographic location, socioeconomic status, or other factors. Urgent action is needed to address this complex and multifaceted challenge and create supportive environments for affected individuals. Innovative, collective efforts can alleviate the burden of cervical cancer stigma and assist in the achievement of WHO's cervical cancer elimination goals.

Hyo Sook Bae: Conceptualization; Writing—original draft; Writing—review & editing; Investigation; Project administration. Sarah M. Temkin: Conceptualization; Writing—review & editing; Supervision.

The authors declare no conflicts of interest.

This manuscript does not represent the official view of ORWH, NCI, or the National Institutes of Health (NIH).