Improving Cervical Cancer Outcomes: The Role of Stigma

Cervical cancer is the only cancer that is largely preventable through a vaccine. The human papilloma virus (HPV) vaccine provides protection against most forms of the disease, yet it remains the fourth most common cancer in women globally. There were an estimated 660,000 new cases and 350,000 deaths attributed to cervical cancer in 2022—with 94% of these deaths occurring in low- and middle-income countries, according to the World Health Organization.

I am a senior public health researcher at RTI International and I conduct research on cervical cancer in India—which accounts for one-fifth of the global burden of cervical cancer cases and mortality. A central focus of my research is how stigma impacts HPV vaccine uptake and cervical cancer outcomes in India.

Gendered Stigma Throughout the Cancer Life Cycle

Cancer-related stigma in India significantly hinders women’s access to prevention, testing, and treatment. Viewed as a terminal condition, cancer evokes fear and hopelessness regardless of the actual prognosis, leading to stigma and ostracization. In our pilot study, 85% of patients and 75% of caregivers reported experiencing some form of stigma, with many holding fatalistic beliefs. 

Gender norms exacerbate these challenges, as women often lack autonomy in health decisions and prioritize family well-being over their own care, delaying diagnosis and treatment. These findings highlight the urgent need for widespread cancer education to dispel misconceptions and reduce stigma.

Our research has revealed several stigma-related barriers to accessing cervical cancer-related healthcare and support, including: 

• Barriers to HPV vaccination: Qualitative research in West Bengal, India revealed that while adolescent girls expressed interest in being vaccinated for HPV, their parents acted as gatekeepers of their health decisions and physicians were hesitant to recommend the vaccine for young girls.
• Barriers to diagnosis and treatment: Our research also uncovered a significant link between stigma and women’s hesitancy to be screened and tested for cervical cancer. Even when testing is provided for free, many women still felt hesitant to get tested, expressing sentiments such as, "If I go for testing, people will assume I have cancer," or "I fear that if I get tested, it will mean I already have cancer." Embarrassment also plays a role, as many women feel uncomfortable discussing symptoms with family members or healthcare providers.
• Living with cancer: Many women living with cancer feel a sense of shame and are reluctant to disclose their diagnosis, fearing judgment and ostracization from their communities. Even after a woman’s death, the stigma often extends to her family. Families of women who have passed away due to cervical cancer report being ostracized by their extended family and community. Families often avoid social gatherings due to feelings of embarrassment and isolation.

Developing Culturally Specific Stigma Measurement Tools

Measuring stigma is vital to improving cervical cancer outcomes by identifying barriers to care and informing culturally specific strategies such as education and gender-responsive policies. Effective stigma measurement tools must consider cultural and religious beliefs (e.g., illness as a result of past actions), cancer-specific social challenges (e.g., shame), and regional differences in these views (e.g., fatalism in rural areas) to dispel myths and reduce stigma-related care delays. More research is needed to understand stigma across different locations to enable the empowerment of women and girls to access prevention, early diagnosis, and treatment for cervical cancer—ultimately saving lives.

This blog was written by Ishu Kataria with support from the RTI Global Gender Center.