Latin America is home to 60 million indigenous people. There are over 400 different indigenous groups across the region, which together represent approximately 10% of the total population of Latin America. Despite the fact that they make up a large proportion of the region’s population, indigenous peoples are marginalized, mostly poor, and largely underserved. They experience immense health disparities, and in our Lancet Oncology commission on cancer control in Latin America, we specifically discuss cancer risks, care, and outcomes in this vulnerable population.
Although there is no universal definition for indigeneity, there is a general consensus in Latin America that “indigenous” applies to descendants of the people who lived on the continent prior to European arrival. Though indigenous groups are culturally diverse, they share many common experiences – such as colonization, forced migration, marginalization, and suppression of their languages and cultures – that have resulted in similar poor socioeconomic conditions and health inequalities today.
Despite the fact that indigenous people make up 10% of the Latin American population, there is limited epidemiological data on their health conditions and outcomes, especially when it comes to cancer. In fact, there are no national cancer registries that account for ethnicity and indigeneity in the region. However, some smaller studies have shown that indigenous populations in Latin America – like those in Australia, New Zealand, Canada, and the U.S. – have more adverse cancer presentations and outcomes than their non-indigenous counterparts.
Research has shown that indigenous people are at greater risk for certain cancers and toxic exposures, including:
- Cervical cancer: There is a higher burden of cervical cancer among indigenous and rural women. This is most likely due to limited access to HPV vaccination, Pap testing, and early treatment, all of which prevent advanced cervical cancer.
- Hepatocellular carcinoma: Indigenous people have higher rates of hepatocellular carcinoma, which can be attributed to the high prevalence of viral hepatitis, alcohol use, and carcinogenic environmental exposures.
- Gastric cancer: Risk factors for gastric cancer among indigenous people include tobacco and alcohol use, higher intake of harmful food preservatives due to lack of refrigeration, and untreated H. pylori infection.
- Indoor smoke exposure: Many indigenous populations suffer from overexposure to harmful smoke pollution because they use biomass fuel for heating and cooking. Many combustion byproducts are carcinogenic.
- Environmental carcinogens: Indigenous people often live on environmentally contaminated or degraded land and are exposed to toxins such as mercury, DDT, arsenic, and petroleum.
Barriers to Care
Indigenous populations have relatively poor health outcomes, due not only to their greater risk for certain diseases, but also the many barriers they face when trying to access health care. They often reside in remote or rural communities without access to health clinics or proper cancer screening. When health services are available, they are often of poor quality and patients must undergo long waiting times for screening, follow-up care, and treatment.
Even when an indigenous patient is able to access a health care facility, cultural differences can adversely affect the patient’s interactions with modern health services. Many times, doctors are unaware of or insensitive to cultural differences, or they do not have the time to give proper explanations of the disease or next steps in care. Negative experiences can not only affect the management of the patient’s current disease, but can negatively affect health-seeking behavior in the future.
Lack of Research
We actually know very little about health and cancer among indigenous populations. Only 10% of medical publications from the Latin American region address indigenous health. An even smaller percentage of this research pertains specifically to cancer among indigenous peoples, despite the fact that they bear a disproportionately large burden of disease. We need well-coordinated research efforts to better understand risk factors, lifestyle factors, social determinants of health, environmental exposures, health-seeking behaviors, and access to oncologic services for indigenous people in Latin America. It is not until we have a comprehensive view of the problem that we can design sustainable interventions to improve outcomes.
There are some potential solutions we suggest to begin addressing the burden of cancer among indigenous populations:
- Cancer registries: What first need to establish cancer registries that specifically include ethnic data at the national, regional, and institutional levels in Latin America. This step is necessary to collect important data on indigenous health and cancer outcomes.
- Cancer prevention programs: Many of the cancers that disproportionately affect indigenous populations are preventable. We therefore recommend the expansion of cancer prevention programs, such as public education campaigns, the formation of advocacy groups, expanded HPV and viral hepatitis vaccination, cervical cancer screening, and public programs to control smoking and harmful environmental exposures.
- Provider education: To improve provider and patient relationships, we suggest providing education to health care providers on cultural sensitivity and health needs specific to indigenous populations. Additionally, hospitals in areas that service indigenous people could provide interpreting services and increase training of female health workers, since studies have shown that indigenous women strongly prefer female providers.
With more robust epidemiological data and a deeper understanding of the cancer burden among indigenous peoples, we can then work to reduce health disparities and improve outcomes of this vulnerable and underserved patient population.
Earlier this month, we launched our newest Patient Navigation Program in Montevideo, Uruguay. At Jardines del Hipodromo, a community health center in Uruguay’s capital city, two patient navigators are helping women with abnormal Pap tests receive the follow-up care they need.
Pap tests are an important step in the early detection of cervical abnormalities and critical for the prevention of cervical cancer. Cervical cancer is one of the most common cancers affecting women in Uruguay and other low- and middle-income countries, and despite a comprehensive national prevention plan, the disease continues to impact the most vulnerable women in Uruguayan society – women in the public sector, young and single mothers, and those with lower educational levels and socioeconomic status.
In order to detect and prevent the progression of cervical cancer, Pap tests are recommended for every women between 21 and 69 years of age. However, the proportion of women who receive a Pap test in Uruguay is low, and among those who do receive a Pap test, few know the results of their test or move on to receive the recommended follow-up care. The important thing to know about cervical cancer is that it is preventable – through screening, early detection, and timely follow-up, no woman should have to suffer from it. Yet women in Uruguay and other low- and middle-income countries are still presenting with cervical cancer at advanced stages and, as a result, are dying from a preventable disease.
Patient navigation is one important and cost-effective way to enhance access to health care for underserved and vulnerable patients who suffer from – or are at great risk from suffering from – cancer. Patient navigators are specialized health care workers that operate at the intersection of social work, community outreach, and patient support, and they are important liaisons between patients and their health care teams. In Uruguay, our patient navigators are there to help women understand their Pap test results, know what they should do next, access existing health resources, and overcome barriers to receive the follow-up care they need. In this way, navigators are supporting women as they “navigate” the health system to access life-saving screening and treatment, thereby improving patient outcomes and cancer mortality.
Here are five important ways in which patient navigators are helping women in Uruguay:
1. Delivering test results: In a fragmented health system, sometimes just knowing your test results can be half of the battle for women receiving recommended Pap tests at their local health center. In Uruguay, there is a very important national plan to prevent cervical cancer, and the national program reads Pap tests from around the country to determine whether they are normal or not. Unfortunately, those results are not delivered back to the health center where the Pap test was performed. Even though women are supposed to receive a call from the national program with their results, the health center has no way of knowing which patients need follow-up care or if the women in their clinic are even receiving these calls. As part of the new Patient Navigation Program, navigators will personally call every women in the health center with an abnormal Pap result in the past two years to deliver the results.
2. Coordinating next steps: So your results have come back abnormal…now what? Once a woman learns of her Pap result from the navigator, the navigator will tell her what the recommended follow-up care is. The woman might need to come back for a repeat Pap, she may need a different test, or sometimes she will have to go to a specialty health care center for follow-up. The navigator will know this information and know how to help the woman get to where she needs to be – either by scheduling the follow-up appointment, informing her about clinic hours and days of services, or connecting her with a gynecologist to learn more about her options.
3. Overcoming barriers to care: Oftentimes, it isn’t enough to simply have a follow-up appointment scheduled. Patients are often faced with barriers that prevent them from showing up to their appointment or continuing to attend important follow-up appointments in the future. Work, family obligations, and childcare are some of the most common barriers that patients – especially women – face when trying to find time to go to the doctor. Other barriers may include lack of proper health insurance paperwork, difficulty reading or writing, language barriers, or lack of transportation to the clinic. The navigator is equipped to help with each of these issues – either by helping directly with the filing of paperwork for health insurance or patient registration, or connecting the patient to community resources for help with childcare or transportation. Sometimes something as simple as being able to purchase a discounted bus pass can help a women attend a lifesaving follow-up appointment.
4. Educating and empowering: In addition to all of the “logistical” barriers a patient could face, there are educational and psychological barriers that keep patients from attending appointments and making the most of their time with their doctor. Navigators also work to help patients understand what an abnormal Pap test means, as well as the importance of Pap tests, follow-up appointments, and both initiating and completing medical treatment. In this way, navigators can help empower patients to take an active role in seeking out healthcare, so women can continue positive health-seeking behaviors in this and other aspects of their health. By educating women about the importance of taking control of your health, the navigator can have a “ripple effect” in the community that isn’t limited just to the prevention of cervical cancer, but extends to other aspects of personal and family health.
5. Providing emotional support: Finally, a navigator provides emotional support throughout a woman’s journey to seek out her follow-up care. The anxiety that comes with an abnormal test result can be a barrier in and of itself, and many women feel shame or fear, which prevents them from addressing the issue early. They also worry about the impact on their families and jobs, and a navigator is there to connect women to support groups or simply provide emotional support by listening to and empathizing with them. Having an advocate dissipates some of the anxiety associated with coming to the health center to see a doctor, perform another test, or start treatment for a disease, and as a woman is shuttled around from doctor to doctor within a fragmented health system, a navigator can be a friendly face or an extra lifeline in a time of need.
In these ways, patient navigators facilitate access to timely and quality care and help create a more positive healthcare experience, which lead to better health outcomes and greater patient empowerment. Our patient navigators are working to change the way follow-up care is provided to women in Montevideo, and their work will undoubtedly have a positive impact on the health center, the community, and the health system.
GCI collaborators recently published an extensive review article “Cervical Cancer Control in Latin America: A Call to Action,” led by Dr. Brittany Bychkovsky. The paper outlined the current state of HPV vaccination and cervical cancer screening in Latin America, and noted the challenges of a successful campaign against cervical cancer throughout the region.
Here are some key facts from the paper:
- Human papillomavirus (HPV) is the most common sexually transmitted infection worldwide
- HPV is associated with the majority of cervical cancers
- 88% of cervical cancer deaths occur in low- and middle-income countries (LMICs)
- Cervical cancer is the second most common cause of cancer-related deaths among women in Latin America
- Deaths from cervical cancer are 100% preventable by vaccination and screening
- <55% of eligible women in Latin America received a recent Pap test
- Although 80% of young girls in Latin America live in countries with an HPV immunization program, the majority of girls lack access to receive and complete the vaccine series
The paper concluded with a call to action to improve cervical cancer control throughout Latin America. Dr. Bychkovsky and her team put forth some possible strategies for controlling cervical cancer in Latin America moving forward:
- Primary prevention (HPV vaccination): The Pan American Health Organization (PAHO) recommends that HPV vaccination be introduced only if the immunization program is public, targets the whole country, and gradually increases its rates to achieve high coverage. The most important factors to consider include:
- Coverage: The incidence of cervical cancer will be reduced if vaccination coverage is high (>70%).
- Cost: The HPV vaccine should be procured at reduced rates so the program may be cost-effective for the LMICs of Latin America.
- Target population: All vaccination plans in Latin America recommend vaccinating preadolescent girls between 9 and 12 years of age.
- Dose: PAHO and WHO recommend introducing the vaccine on a 3-dose or 2-dose schedule (studies have shown that the 2-dose will likely become the new standard in Latin America.)
- Administration: Vaccination programs will be most successful if integrated into schools.
- Monitoring: Programs must be monitored to ensure efficacy, efficiency, and cost-effectiveness.
- Secondary prevention (screening): In addition to HPV vaccination, screening will remain essential because it can take decades for HPV vaccination to have substantial effects on cervical cancer incidence. The team put forth some strategies for optimal screening practices:
- Novel approaches: Mobile HPV screening programs, like one implemented in Panama, are effective in reducing cervical cancer incidence and are able to reach the most underserved communities.
- HPV-DNA testing: This has proven to be effective as a stand-alone test for screening, and allows self-sampling, which increases participation rates among women in Latin America.
- Visual inspection with acetic acid (VIA): This has been proven to be an effective screening tool in low-resource areas and can reduce cervical cancer mortality by over 30%.
- Further management:
- Patient education: Educational initiatives are essential for increasing awareness, especially among disenfranchised and rural populations. This can be done through media campaigns, or through the use of patient navigation programs (PNPs).
- Patient navigators: PNPs not only help increase awareness and education on cervical cancer prevention, but they also help assist positively screened women with accessing timely follow-up care and health resources.