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.
When most people think of health in low- and middle-income countries (LMICs), they think of infectious disease. Infectious disease has, after all, been the most pressing health concern for the less developed regions of the world, and it oftentimes commands the attention of both media and global health philanthropy worldwide. However, what most people don’t realize is that non-communicable diseases, such as cancer, are overtaking infectious disease as the leading healthcare threat in these LMICs. And when the health system needs to divide its attention between what we are now calling the “double burden” of communicable and non-communicable diseases, it can get overwhelmed.
It is easy for public health officials to wave off the more gradual growth of non-communicable diseases in these countries, especially when patients are suffering from acute infectious illnesses that seem to demand more immediate attention. But as cancer incidence in LMICs rises due, among other factors, to aging, Western lifestyles, cancer-causing infections, and carcinogenic environmental factors, governments and health ministries cannot stand idly by. The burden of cancer in LMICs is now greater than that in more developed countries, as more and more patients are dying of advanced stage disease.
It is time to take action in LMICs to prevent, detect, and treat cancer as early and effectively as possible, and this is accomplished through national cancer control plans (NCCPs).
According to the World Health Organization, an NCCP is defined as “a public health program designed to reduce cancer incidence and mortality and to improve the quality of life of cancer patients, through the systematic and equitable implementation of evidence-based strategies for prevention, early detection, diagnosis, treatment and palliation, making the best use of available resources.” That’s a hefty definition, but essentially NCCPs lower the number of new cancer cases a country sees each year and improve the quality of care cancer patients receive by following a comprehensive national plan.
National cancer control plans are so important for countries that need to address the growing global cancer burden. Establishing an effective NCCP integrates existing health systems in a country and coordinates efforts to address the complexities of cancer care and treatment. However, many LMICs do not have one of these plans and are even struggling to adopt one in the face of competing health priorities, inadequate resources, and lack of expertise.
Latin America is one example of a region that exhibits a great need for national cancer control plans, but countries throughout the region are struggling to design and implement them. One big hurdle they face? Lack of adequate cancer registries.
Cancer registries are a fundamental requirement for the successful implementation of NCCPs. Why? Because you need to know the problem before you can implement a plan to fix that problem. Cancer registries collect highly valuable epidemiologic data on the state of cancer in a country – which cancers are most common, which areas have the highest cancer burden, who is most affected by cancer, etc. The data collected in cancer registries is essential for health officials to know the who, what, when, where, and why of their national cancer control plans. Armed with the knowledge of the local needs and current deficiencies in cancer care, a country can develop an evidence-based and forward-looking NCCP.
Fortunately, the percentage of Latin American and Caribbean countries that reported having a population-based cancer registry increased from 21% to 67% between 2011 and 2014. However, there is still a long way to go, as the proportion of the population that is actually covered by these registries is still quite low compared to developed countries. As the quality and quantity of data collected in Latin America grows, health authorities can begin to establish specific public health strategies to address the growing burden of cancer throughout the region.
Peru is a great example of a country in Latin America that has created, adopted, and implemented a national cancer control plan, which they have named “Plan Esperanza.” Plan Esperanza was created by a multidisciplinary team, including policy makers, that brought together different constituents to put forth comprehensive cancer control policies. The plan now impressively includes ten neoplastic diseases. Since the adoption of their NCCP, the following amazing things have happened in Peru:
- The proportion of patients included in the universal healthcare system increased from 17% to 64%
- The proportion of patients who paid out-of-pocket expenses for cancer treatment decreased from 59% to 7%
- 16 million people have received preventive interventions, such as educational sessions and counselling
- 2.5 million people have been screened for cervical, breast, gastric, colon, or prostate cancer – or a combination of these diseases
National cancer control plans like Peru’s are so important that coordinated international efforts – spearheaded by big organizations like the WHO – have been cropping up over the past few years. For example, the WHO endorsed the Global Action Plan for the Prevention and Control of Non-Communicable Diseases 2013-2020, which aims to achieve a 25% reduction in premature mortality from NCDs by 2025. WHO and PAHO (the Pan American Health Organization) launched the Women’s Cancer Initiative to bring together partners to set up action plans for the prevention and control of cervical and breast cancer in Latin America. Finally, the International Cancer Control Planning Partnership (ICCPP) was launched due to the combined forces of the Center for Global Health and the National Institutes of Health in the United States, the Latin America and Caribbean Society of Medical Oncology, PAHO, and the Union for International Cancer Control. The goal of the ICCPP is to implement and assess national cancer control plans with a worldwide framework and international support.
Undoubtedly, there is an urgent need to plan, develop, and better implement national cancer strategies, as low- and middle-income countries continue to bear more and more of the global cancer burden. What other countries or international organizations have been particularly successful at designing and implementing NCCPs? What more is needed from the international community to make these important goals a reality? Join the conversation and comment below!
Information in this post is summarized from our Lancet Oncology Commissions on Planning Cancer Control in Latin America and the Caribbean and Progress and remaining challenges for cancer control in Latin America and the Caribbean.