Though cancer of the cervix is the third-most-common cancer in India, it accounts for the highest number of cancer deaths. The country’s rising population led to 100,000 new diagnoses of cervical cancer in 2016 and is estimated to reach about 104,000 by 2020, according to projections by the Indian Council of Medical Research.
While the numbers are daunting, it is clear that morbidity and mortality due to cervical cancer is preventable. Not only has a safe and effective vaccine to prevent human papilloma virus infections—the primary cause of cervical malignancies—been available for a decade, but multiple screening and treatment methods have been researched, proven effective and demonstrated, including in India.
India was the first country to establish national targets for reductions in premature mortality due to NCDs, and has taken a leadership role in fostering dialogue on the updated strategy on women’s, children’s, and adolescent’s health. Building on this foundation, the national government has also committed to addressing the country’s cervical cancer burden as part of its National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS).
Despite this background as a forerunner in international health, India has made limited progress toward building a functional national cervical cancer prevention program. As in other parts of the world, fear of cancer and stigma surrounding gynecological illness have been barriers to learning about cervical cancer and undergoing screening. Other obstacles have traditionally included misconceptions about the screening process; lack of community-level awareness of cervical cancer; failure to prioritize women’s health; poor communication between healthcare providers and women; and the dearth of robust systems for tracking referrals, which has compromised follow-up.
Understanding and addressing these challenges is the key to facilitating primary and secondary prevention of cervical cancer in India.
Because health is a state responsibility in India, understanding the ecosystem operating at the state level is critical to the translation of evidence into policy and practice. In an effort to build that understanding, the American Cancer Study contracted RTI Global India to conduct a study on comprehensive cervical cancer prevention in India, focusing on the states of Tamil Nadu and Karnataka.
The five-month study assessed and mapped the impact that the sociocultural environment, health system, communities, organizations, families, and individuals have on the pursuit of comprehensive cervical cancer prevention in India. The research aimed to generate evidence to inform policy-making and advocacy to address cervical cancer in Tamil Nadu and Karnataka.
In Tamil Nadu, we examined multi-stakeholder perspectives on the status of the ongoing, state-led secondary prevention program and the opportunities for introducing primary prevention of cervical cancer through HPV vaccination. In Karnataka, we conducted a limited exploration of the perspectives of state-level stakeholders on the need and potential for comprehensive cervical cancer prevention.
Our team collected data through in-depth interviews and focus group discussions centered on factors that facilitate or impede comprehensive cervical cancer prevention. The approach received both governmental and institutional ethics committee approvals, ensuring that a broad range of occupations, geographic locations, socioeconomic backgrounds, and levels of influence were represented.
Our interviews and focus group discussions revealed a number of insights on current efforts to address cervical cancer through secondary prevention in Tamil Nadu and Karnataka. The governments of Tamil Nadu and Karnataka have not made a policy decision on the introduction of the HPV vaccine, and therefore discussions focused on stakeholders’ knowledge about the vaccines and factors that could inform a policy decision and facilitate or pose barriers to rollout.
While some stakeholders expressed concerns about the vaccine’s safety and efficacy, specialists—particularly those in leadership positions in the Federation of Obstetrics and Gynecology Studies of India and the Indian Academy of Pediatrics—were strong advocates of vaccination. All stakeholders highlighted cost as a major barrier to public provision of the vaccine, focusing on the challenges involved in financing and sustaining the program as well as how to ensure that poor clients had fair access. The consensus, particularly in Tamil Nadu, was that the HPV vaccine would need to be introduced through the Universal Immunization Program as a partnership between the health and education departments to ensure widespread access.
Our findings indicate that in Tamil Nadu the successful state-wide scale-up of screening has been facilitated at least in part by an emphasis on strengthening health systems through an expansion in human resources and continuous program monitoring and evaluation. A similar approach is being pilot-tested in Karnataka. However, our data point to several ways in which the ecosystem for cervical cancer prevention can be further enhanced in these states, including
Our studies revealed an ecosystem in which both Tamil Nadu and Karnataka are well-positioned to continue to lead India toward control of cervical cancer through an expansion of its current investments in secondary prevention and eventual implementation of primary prevention. Using our findings and the broader understanding of stakeholder issues we have gained, our team aims to help identify appropriate financing mechanisms to implement and sustain a comprehensive prevention approach that could stem the tide of cervical cancer deaths in India and beyond.
While the numbers are daunting, it is clear that morbidity and mortality due to cervical cancer is preventable. Not only has a safe and effective vaccine to prevent human papilloma virus infections—the primary cause of cervical malignancies—been available for a decade, but multiple screening and treatment methods have been researched, proven effective and demonstrated, including in India.
India was the first country to establish national targets for reductions in premature mortality due to NCDs, and has taken a leadership role in fostering dialogue on the updated strategy on women’s, children’s, and adolescent’s health. Building on this foundation, the national government has also committed to addressing the country’s cervical cancer burden as part of its National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases, and Stroke (NPCDCS).
Despite this background as a forerunner in international health, India has made limited progress toward building a functional national cervical cancer prevention program. As in other parts of the world, fear of cancer and stigma surrounding gynecological illness have been barriers to learning about cervical cancer and undergoing screening. Other obstacles have traditionally included misconceptions about the screening process; lack of community-level awareness of cervical cancer; failure to prioritize women’s health; poor communication between healthcare providers and women; and the dearth of robust systems for tracking referrals, which has compromised follow-up.
Understanding and addressing these challenges is the key to facilitating primary and secondary prevention of cervical cancer in India.
Conducting a Study to Incorporate the Stakeholder Perspective and Evaluate Barriers
Because health is a state responsibility in India, understanding the ecosystem operating at the state level is critical to the translation of evidence into policy and practice. In an effort to build that understanding, the American Cancer Study contracted RTI Global India to conduct a study on comprehensive cervical cancer prevention in India, focusing on the states of Tamil Nadu and Karnataka.
The five-month study assessed and mapped the impact that the sociocultural environment, health system, communities, organizations, families, and individuals have on the pursuit of comprehensive cervical cancer prevention in India. The research aimed to generate evidence to inform policy-making and advocacy to address cervical cancer in Tamil Nadu and Karnataka.
In Tamil Nadu, we examined multi-stakeholder perspectives on the status of the ongoing, state-led secondary prevention program and the opportunities for introducing primary prevention of cervical cancer through HPV vaccination. In Karnataka, we conducted a limited exploration of the perspectives of state-level stakeholders on the need and potential for comprehensive cervical cancer prevention.
Our team collected data through in-depth interviews and focus group discussions centered on factors that facilitate or impede comprehensive cervical cancer prevention. The approach received both governmental and institutional ethics committee approvals, ensuring that a broad range of occupations, geographic locations, socioeconomic backgrounds, and levels of influence were represented.
Unearthing and Exploring Concerns Surrounding Vaccine Implementation, Distribution, and Funding
Our interviews and focus group discussions revealed a number of insights on current efforts to address cervical cancer through secondary prevention in Tamil Nadu and Karnataka. The governments of Tamil Nadu and Karnataka have not made a policy decision on the introduction of the HPV vaccine, and therefore discussions focused on stakeholders’ knowledge about the vaccines and factors that could inform a policy decision and facilitate or pose barriers to rollout.
While some stakeholders expressed concerns about the vaccine’s safety and efficacy, specialists—particularly those in leadership positions in the Federation of Obstetrics and Gynecology Studies of India and the Indian Academy of Pediatrics—were strong advocates of vaccination. All stakeholders highlighted cost as a major barrier to public provision of the vaccine, focusing on the challenges involved in financing and sustaining the program as well as how to ensure that poor clients had fair access. The consensus, particularly in Tamil Nadu, was that the HPV vaccine would need to be introduced through the Universal Immunization Program as a partnership between the health and education departments to ensure widespread access.
Our findings indicate that in Tamil Nadu the successful state-wide scale-up of screening has been facilitated at least in part by an emphasis on strengthening health systems through an expansion in human resources and continuous program monitoring and evaluation. A similar approach is being pilot-tested in Karnataka. However, our data point to several ways in which the ecosystem for cervical cancer prevention can be further enhanced in these states, including
- Improving cancer literacy
- Providing greater attention to quality of care
- Engaging the private sector
- Cultivating cervical cancer prevention champions
- Identifying finance mechanisms to support cervical cancer prevention.
Our studies revealed an ecosystem in which both Tamil Nadu and Karnataka are well-positioned to continue to lead India toward control of cervical cancer through an expansion of its current investments in secondary prevention and eventual implementation of primary prevention. Using our findings and the broader understanding of stakeholder issues we have gained, our team aims to help identify appropriate financing mechanisms to implement and sustain a comprehensive prevention approach that could stem the tide of cervical cancer deaths in India and beyond.