Prevention of Cervical Cancer: Overcoming Cultural Barriers Faced by Quechua Women in Andean Peru

By Cassidy Mullen

Mullen cover image

Andean woman and child, adapted from photo by Andy Salazar on Unsplash

What would you do if you were diagnosed with cancer? Cancer is often one of the most frightening diagnoses for an individual in any country to receive. According to the WHO, “Cancer is a leading cause of death worldwide, accounting for nearly 10 million deaths in 2020.” Because cancer is a leading cause of death, many strategies have been developed to prevent different forms of cancer. To prevent some cancers, such as cervical cancer, people receive vaccines, like the HPV vaccine, or undergo medical examinations by doctors; but what happens when medical facilities are hundreds of miles away and you don't have a car? In rural areas of Peru, walking to medical facilities to seek treatment or care could take hours or days. Easy identification and prevention of cancer often help individuals avoid death, but geographic, economic, and cultural barriers can cause even patients with easily diagnosable cancer to die in large numbers. Cervical cancer in rural areas of Peru is a particularly important issue as it is the leading malignant neoplasm in Peruvian women (Aguilar et al.). The cervix uteri cancer national incidence in Peru is a shocking 32.7 out of 100,000 women compared to 7.60 out of 100,000 women in the United States (Aguilar et al.; “Gynecological Care”). Is there more that can be done to help Peruvian women? After reviewing recent strategies to decrease the incidence of cervical cancer in underdeveloped countries, I propose that undergraduate students could aid outreach efforts to help women overcome cultural barriers. Implementing education, stigma-reducing focus groups, and community-building activities can lower the cervical cancer incidence rates among Quechua women in Andean Peru.

On my eighteenth birthday, I found myself on a plane to Peru. It was one of those planes with two aisles and a two-three-two seat formation. As I sat in the middle seat of the middle section for six hours surrounded by strangers, I began to feel sorry for myself. I think the man next to me felt sorry for me too, as he gaped at the empty box of Ferrero Rocher I practically inhaled in the first two hours of the flight. It was not how I imagined spending my eighteenth birthday. Regardless of this dreary start, my trip to Peru would be more exciting—and heartbreaking—than I had ever expected. In Ollantaytambo, Peru, I met a woman who worked for a company named Sacred Valley Health. As I had previous exposure to working with cancer patients, I asked her about the prevalence of cancer and treatment barriers in the region. Her response accurately painted the issue of cervical cancer as a prevalent, multifaceted burden to Quechua women of Andean Peru. Although cervical cancer is an issue in many Peruvian cities, there is a notable disparity between the incidence rates in Lima and other more rural and less-progressive areas of Peru. The Metropolitan Cancer Registry identified the age-standardized cancer rate (ASR) as 19.2 new cases per 100,000 women annually, which is different from the national ASR of 32.7 new cases per 100,000 women (Aguilar et al.). Even within Lima, the wealthiest districts in the city have the lowest cervical cancer incidence (Aguilar et al.). Devising strategies to help individuals in rural areas overcome treatment barriers could make a significant impact on decreasing national cancer rates.

One of the main issues in underdeveloped countries is that medical resources and screening programs are not available to a large portion of the population. This results in cancer identification in individuals once the cancer is severe and more difficult to treat. Since 1998, the Peruvian government has taken initiatives toward cancer treatment (Aguilar et al.). In 1998, the first plan for breast and cervical cancer prevention was launched, followed by the first guidelines established for cervical cancer prevention in 2000, the 2002 Program for Health Promotion and Cancer Control, the 2005 Multicultural Coalition “Peru Against Cancer,” the First National Plan for cancer control in 2006, and the current 2012 plan for cancer control called “Plan Esperanza,” which supports and promotes cancer advisory groups (Aguilar et al.). One other notable project was the TATI project, which works to provide women from the Peruvian jungle with screening and immediate treatment of cervix and uteri lesions in 2001. Despite these important initiatives, which are commendable first steps, there is more that can be done. There is an abundance of women in rural areas of Peru that continue to face cultural barriers that prevent them from getting tested for cervical cancer.

Teaching Peruvian women to be advocates for their health is essential in creating a sustainable model to reduce the incidence of malignant cervical cancer. A member of Sacred Valley health in Ollantaytambo noted the presence of stigmatization around the topic of cervical cancer. Raising awareness around the issue and teaching women how to advocate for their health is an important barrier to overcome. Plan Esperanza, approved by the Peruvian Government in 2012, emphasizes the idea that “all members of society must be active protagonists in the control of their health” (Vidaurre et al.). Plan Esperanza is “a program to navigate through multiple communication styles [that] is crucial to improve the dissemination of simple, positive, culturally appropriate messages regarding healthy lifestyles, [and the] availability of preventive medical examinations for healthy individuals (asymptomatic) […]” (Vidaurre et al.). Although this plan demonstrates that the attitudes of locals have changed significantly since its implementation, it is clear that stigma and fear are still prevalent issues that must be overcome. While working with Cervicuso and setting up a pop-up site to perform pap smear tests in 2018, a member of Sacred Valley Health noted that very few women came because they did not feel comfortable. Comfort and familiarity can play a large role in a woman’s compliance with cervical cancer screenings. As Alfredo Aguilar of the Department of Medical Oncology in Lima, Peru notes, “[I]n a survey of 225 women attending the public clinic in Los Olivos district, […] the fear and shame of the examination, neglect to attend to the gynecological control, and laziness to take the screening were factors identified for the non‑compliance of the cervical cancer screening” (Aguilar et al.). Implementing discussion groups that allow women to connect with other community members and talk about important issues to increase comfort levels and decrease stigma could be one potential solution.

Culturally, it is difficult for many citizens of Peru to talk about reproductive health, so implementing discussion groups could help reduce stigmatization around the topic. The spouses and husbands play a large role in decreasing cultural de-stigmatization by discussing reproductive health and encouraging their wives to get tested for cervical cancer. A member of Sacred Valley Health (SVH) said that when the topic of condom-usage surfaced in their newly developed men’s discussion group, many of them felt uncomfortable talking about it. In the way that SVH has worked to reduce stigma around the topic of sex, “Community Based Prevention Counseling” is an important measure that can be used to teach locals about the importance of having safe sex (Vidaurre et al.). The SVH member mentioned that many men in Andean Peru leave the house to work on the Inca trail, sleep with other women, and then return home without getting tested for sexually transmitted infections before sleeping with their wife again. Human papillomavirus (HPV) is a carcinogenic sexually transmitted infection that substantially increases the risk of cervical cancer (WHO). According to a local from Ollantetambo, many men do not like to get involved in their wife’s reproductive health. Although most men are not preventing women from getting tested for infections and cancer, most also are not providing the support and encouragement that may lead many women to get tested when available.

One important sociological factor to consider in designing an outreach effort in the initiative to prevent the incidence of malignant cervical cancer is the impact of local neighbors and social capital. Social capital can be thought of as “the individual and community-level advantages arising from memberships of local community groups” (Campbell et al.). Although family connections often provide support when it comes to healthcare-related decisions, neighbors and friends in an individual’s social circle have a greater impact on a person’s likelihood to get a pap smear test than family density in their social network (Luque et al.). Potentially including a community-building component into this outreach effort to help individuals get to know their neighbors and make friends could have a positive impact on their health. If women are willing to gather for community-based prevention counseling, then a more lighthearted social activity following or preceding the group counseling or discussion might help improve the social capital of the community. A survey could be taken of social activities that individuals would be likely or excited to participate in to implement this strategy more effectively.

Furthermore, a social activity may make individuals more likely to come to the counseling session if the individual is more drawn to the social opportunity than compelled to talk about their health. Some people believe that government intervention and systematic implementation of treatment with material resources is the most effective method of treatment. After Plan Esperanza’s efforts, the percentage of people who believed that cancer is preventable increased 3.7% in urban areas and 2.6% in rural areas from 2013-2014 (Vidaurre). While it is true that larger government-affiliated efforts such as Plan Esperanza may provide funding and resources for cancer prevention, increasing social capital among women in Andean communities may be even more effective in the prevention of cervical cancer. This can be done by providing an environment to build individual, personal relationships. According to a study in Zimbabwe that focused on social capital in rural HIV competent communities, though “formal interventions (by governments, NGOs, or donors) carry a small proportion of the burden [of managing HIV/AIDS], the bulk was carried by the communities in which the HIV-affected live their daily lives'' (Campbell et al.). The results of this study clearly illustrate that social relationships are an effective way to promote “health-enhancing behavior change” (Campbell et al.). An outreach model that focuses on the importance of not just education but also community building has the potential to be very effective.

Providing opportunities for community building will hopefully create friendships that continue outside of a facilitated group context. In turn, a stronger community is built, promoting the sharing of ideas and information about health, critical thinking, a sense of local ownership and responsibility, identification of group strengths and weaknesses, and a sense of solidarity and common purpose (Campbell et al.). To overcome geographic barriers, social activities and educational discussion groups can potentially be implemented on the weekends when rural community members come to local towns to sell goods. This is also an adaptive plan that relies on accompaniment with the local women; therefore, women in rural areas outside of Ollantaytambo can be asked what day of the week they would be most available to participate in group discussions or community activities.

Individual female empowerment has the potential to help women take responsibility for their health. When I was talking to a local male living in Ollantaytambo about sexually transmitted infections, he mentioned that women don’t feel comfortable asking their husbands to wear a condom because their husbands often get defensive and accuse their wives of distrusting them. Many rural communities in Peru still practice traditional, ancient medicine and follow traditional ways. Gender roles and the dominance of a male as the head of the household are coupled with ancient tradition. Professors Suni Petersen and Fiana Sachi at the California School of Professional Psychology write: “Those countries that have highly gendered societies with women in subservient roles also have higher rates of mortality, infectious and parasitic disease, gynecological infection, child malnutrition, and lower rates of prenatal care, child health and immunizations for children (Petersen and Sachi).” These are all health conditions that negatively impact women and/or their children. Despite a cultural structure that may limit the decision-making power and authority of women, women must know that they have a responsibility to keep themselves and their children healthy. Teaching women the power of becoming allies with other women and working against some social norms is important in working towards this goal. Empowerment workshops can be coupled with counseling and group discussions about reproductive health. It is important to note that the use of translators who are both Spanish or English-speaking and fluent in Quechua will need to be utilized for effective communication and implementation of counseling, discussions, and activities.

Facilitating dialogue to develop a relationship of accompaniment with Quechua women in Andean Peru can create an avenue for teaching and lead to a positive, sustainable cycle of teaching among the women themselves. A sustainable model requires accompaniment with the Peruvian women so that they have the ability to become advocates for themselves without the presence of a facilitating third party. As Peruvian philosopher and Catholic theologian Gustavo Gutiérrez states, “Solidarity with the poor means not to try to be the voice of the voiceless. This is NOT the goal. The goal should be that those who have no voice today will have a voice and will be heard” (qtd. in Reifenberg 4). Native people in Peru might feel uncomfortable with foreigners intervening in a seemingly intimate issue for many. Building relationships with the local people is important to successful aid, which might already be difficult due to language barriers. The idea is to use accompaniment to implement a “trainer-on-trainer” model where indigenous women learn to train other women in their homes about the importance of sexual health and testing, which in turn helps destigmatize the topic through discussion (Petersen and Sachi). One of the main problems with the healthcare system in Peru is that citizens who speak Quechua are not treated as equals. The most noticeable discrimination is against people from the mountains, because they have different dress and practices. Many people who have the money and privilege of becoming a doctor in Peru only speak Spanish and not Quechua, which is the only language that many of the citizens are taught. This poses a problem, because, according to a member of Sacred Valley Health, the clinic that local people belong to cannot communicate with the local people and often brushes them aside or leaves them as a last priority. When I was in Ollantaytambo, a local group of women taught my peers and me the basics of emergency wilderness training over the span of three days. In the same manner, the women taught us, they could likely teach each other about the symptoms of cervical cancer and what needs to be done to take preventative measures if only someone teaches them first. A “trainer-on-trainer” method will hopefully increase trust, community building, and willingness to participate in cancer prevention efforts due to the comforts of local familiar faces and a familiar dialect.

With help and guidance from Notre Dame’s Center for Social Concerns, the role of Notre Dame undergraduate students would be to implement the strategies discussed throughout this paper in an outreach effort toward a select group of women in Andean Peru. This would mean implementing a strategic method of teaching women about cervical cancer symptoms and sex education. Additionally, this would require leading and facilitating stigma-reducing discussion groups, encouraging women, and organizing social events in the local Peruvian community. Sacred Valley Health group has experience in this method of engagement and would likely be able to provide guidance, direction, and connections that would enable this plan. It is important to mention that the outreach effort is dynamic and designed to change as the needs and preferences of the group of women are communicated by individuals and community leaders. Building relationships of trust and compassion with the local people is essential. Fr. Gustavo Gutiérrez exclaimed, “some people are happy only if they are helping. This is a question of friendship—you must learn to be beside, walking with another person” (Reifenberg 2). With a model that has a foundation of teaching, community building, and accompaniment, the goal is for women to become teachers for one another and create a positive and effective cycle.

Lastly, economic barriers are important to consider when tackling the issue of cervical cancer in rural areas of Peru. A local male from Ollantaytambo mentioned that some husbands do not encourage their wives to go to health care clinics because they are afraid that the clinics will recommend pills that cost money—to say nothing of larger health issues that would require treatment from hospitals in Cusco, which is a far commute from Ollantaytambo, especially without a car. Presently, inexpensive accessible tests such as the vinegar test can be used to significantly reduce the Cervix uteri cancer incidence rate in developing countries. In India, Surendra Srinivas Shastri, MD, from the Tata Memorial hospital in Mumbai reported that cervical cancer mortality decreased 31% after a clinical trial using a vinegar test with a biennial visual inspection. The study was a randomized twelve-year study of 150,000 women in India (Laino). This test is a sterilized combination of acetic acid with water and can be applied to the cervix using a cotton swab. Because cancerous cells have a higher amount of protein than normal cells, within a minute the cells will gather into a white mass, demonstrating whether or not the patient has cancer (Laino). Not only does this test only cost about one dollar—while a pap smear costs roughly fifteen dollars—but it is also equally accurate. According to health writer Charlene Lanio, “The researchers estimated this strategy could prevent 22,000 cervical cancer deaths every year in India and close to 73,000 in resource-poor countries worldwide.” Implementing this strategy in other developing countries, including Peru, could save thousands of lives. Ideally, a proposal could be made to allow for a training program to teach Andean women how to perform and specialize in giving vinegar tests. This would allow women to feel more comfortable getting treated, as they would have someone who speaks their native language and is likely a friendly face in the local community. Practically, this proposal may face legal challenges as the government may not be willing to train women who speak Quechua. Medical training is also expensive; plus, the vinegar test is still new in the medical community, so unprecedented challenges could couple implementation of this testing strategy. For these reasons, focusing the initiative on community building and teaching may be the best first step in preventing death from malignant cervical cancer with the hope that vinegar tests can eventually be implemented so that more individuals can be tested for one-fifteenth of the price.

Implementing an outreach effort that focuses on reducing stigma through education and discussion, building community, and empowering women can significantly reduce the incidence of cervical cancer among Quechua women living in more rural areas of Andean Peru. Preventative measures focused on sex education to reduce sexually transmitted diseases, along with encouraging discussion about early preventative testing and visual inspection, reduce the likelihood of getting diagnosed with a malignant tumor once it is already too late. Further, focusing on the root of the problem through active allyship and communication instead of relying mainly on material resources that come from big organizations with impersonal, generalized plans is a step in the right direction. I believe that students of the University of Notre Dame have the mind and the heart to participate in a community outreach initiative that facilitates the implementation of these strategies. Through a plan that builds community with women in Peru and initiates a cycle of teaching, students working with the Center for Social Concerns at the University of Notre Dame would have the opportunity to make a small dent in the larger issue of malignant cervical cancer in Peru.