Paper short abstract:

Despite high disease burden and mortality, cervical cancer remains low priority for the health systems especially for low income, rural women in remote areas. CAPED partnered with ACS to address these issues with local and community centered interventions. CA is a useful framework to study this intervention since it’s a setting with multiple inequities related to gender, income and religion/caste.

Paper long abstract:

Despite high disease burden and mortality (India loses one woman to cervical cancer every eight minutes), cervical cancer remains low priority for the health systems. Screening is simple and inexpensive and treatment is effective. Still efforts at disease elimination runs into several challenges including low income for remote, rural and vulnerable communities, women’s health being low in priority, lack of access and affordability for screening and treatment, and stigmas surrounding an STI.

According to the WHO India Cervical Cancer Profile crude cervical cancer incidence per 100,000 women in 2020 was 18.7 with 45,300 cervical cancer deaths recorded (2019). According to latest Lancet report out of the 6,04,127 new cases and 3,41,831 deaths from cervical cancer, 21% of the cases and 23% of the deaths occurred in India. Cervical cancer remains one of the leading case of cancer deaths among women in India and 1 Indian woman dies of cervical cancer every eight minutes. At the moment less than one percent of girls are vaccinated and National Family Health Survey estimates that less than 4% of women are screened. Most screening is concentrated in the urban areas.

Thus cervical cancer screening for rural women in Haryana becomes a health equity issue. Haryana is a largely agrarian and an extremely patriarchal state with one of the poorest sex ratios in India. Haryana also has poor indicators for mother and child health. The health and well being of women, especially in remote rural areas continue to suffer. Women remain at high risk for cervical cancer yet screening is almost non existent. Cervical cancer screening comes under the NPCDCS (National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke) and is offered through PHCs and government hospitals. It is clubbed with breast and oral cancer screening. It is also offered in private hospitals. In rural areas government camps are held but screening uptake is low. Women are often unaware of the issue or avoid due to apathy and mistreatment by the health staff. Nurses and health personnel are also often untrained to convince or even facilitate.

CAPED an NGO working on cancer partnered with American Cancer Society to address these issues with local and community centered interventions. They implemented a Cervical Cancer Awareness & Screening project in rural, low performing areas of Gurugram district, Haryana with the ASHAs (Accredited Social Health Activists) being the lynchpin of community mobilization. ASHAs are local women sharing good connect with women and were effective in bringing into focus women’s health issues besides maternal and child care (most of India’s health policies for women are focused on her pregnancy and delivery – neglecting large cohort of adolescent girls and middle aged women).

Through supporting the leadership at District Health Centers and local Public Health Centers (PHCs) and CHCs, and training/capacity building of ASHAs to increase their knowledge for better community outreach, the number of women seeking screening test and following up on diagnostics increased significantly. The proposed project’s implementation plan is adopted from the INSPIRE (Integrative Systems Praxis for Implementation Research) model of participatory design and implementation of a sustainable and effective cervical cancer screening project.

The areas for intervention were identified with the help of district administration to target the villages that were weakest in terms of cervical cancer screening and awareness. Then training was administered to all the ASHAs in the selected areas. Post surveys short qualitative interviews were also done. The project is now in second phase and key informant and longer focus groups are planned.

After the first phase preliminary analysis indicated that ASHAs knowledge base was impacted and their capacity building led to increase in their confidence in terms of addressing the issue and convincing the women of their community. The women also reported better overall satisfaction at the health centre and felt their voice and bodily autonomy was respected. The project also had the additional impact of spreading awareness about HPV infection at a time when an indigenously produced HPV vaccine is on the verge of nationwide introduction through the public Universal Immunisation Programme (imported HPV vaccine is privately available, optional and expensive).

Capability Approach is a useful framework to study this intervention since it’s a setting with multiple deprivations and inequities related to gender, income and religion/caste. Sen notes that diversity is no secondary complication, rather a fundamental aspect of our interest in equality. Using CA, vulnerabilities at the individual and community level can be recognised and addressed. The women at the risk of cervical cancer and HPV infections are marginalized at an individual level (middle aged, non-earning, low levels of awareness or decision making, primary caretaker of household and children, suffering other health issues due to neglect, and holding poor bargaining power within the household) and face structural causes of disempowerment (living in rural areas, facing discrimination from the public health system etc.)

Thus using quantifiable measures to understand low screening is not sufficient. Using CA functionings can be CAPED’s training of health workers, support provided to women to access screening safely and confidently, access to information to understand test results, and other medical information, and access to logistics like transport, camps etc. Capabilities are the freedoms in the larger connect that make this possible – and this depends on institutional and structural support provided by the NGO in partnership with the state. This has great implications for women's health in a setting where their health is marginalised, they have low bodily autonomy, and routinely and unjustly succumb to preventable diseases.