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End-of-Life Care in Latin America

Cancer care for indigenous populations in Latin America

 

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.

 

Cancer Burden

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.

 

Potential Solutions

There are some potential solutions we suggest to begin addressing the burden of cancer among indigenous populations:

  1. 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.
  2. 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.
  3. 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.

 

Patient Navigation Success Story: Juana

Our Patient Navigation Program in Mexico was only launched a few months ago, but we are already seeing what an amazing service it provides for so many patients. Here, Dr. Enrique Soto tells the story of Juana in Mexico City. With the help of patient navigation, Juana has successfully navigated Mexico City’s health system and is now excited about the prospect of helping other patients like her complete chemotherapy!


 

“Juana is one of the many success stories of our Patient Navigation Program,” says Dr. Enrique Soto, co-investigator for the Patient Navigation Program in Mexico City. “Juana is a delightful 77-year-old woman who lives in a village in the borough of Xochimilco, in the southern part of Mexico City. She was diagnosed with breast cancer in her community and sent to Ajusco Medio General Hospital. After Juana arrived to Ajusco Medio, she underwent a mastectomy with axillary lymph node dissection.”

 

Ajusco Medio is the community hospital where Wendy, Mexico’s first navigator, works to navigate cancer patients to the proper cancer centers throughout the city for follow-up treatment and care. She not only helps schedule follow-up appointments and provides information on health insurance, but she also offers support and friendly face for patients who are trying to receive care within a complex and confusing health system.

 

“In one of her follow-up visits, Juana was approached by Wendy, our patient navigator, who offered to help her receive adjuvant treatment with chemotherapy and radiotherapy. Juana started patient navigation and was navigated to the National Institute of Medical Science and Nutrition. There, she was seen by an oncologist within the first two weeks and enrolled in the Seguro Popular public health insurance system,” Dr. Soto explains.

 

To be seen by an oncologist at a tertiary cancer center within two weeks of referral is an impressive feat in Mexico City, where the median time to arrive to a tertiary care center after being referred is two full months. With Wendy’s help, Juana was able to make this journey in a fraction of the time.

 

“Her biopsies were reviewed and after a complete evaluation by oncologists, surgeons, radiation oncologists, and geriatricians, she was deemed fit for treatment. So far, Juana has had three chemotherapy sessions without any complications, and is getting ready for her radiotherapy,” Dr. Soto says. “She has even participated in another one of our trials exploring the use of smartphones for the follow-up of older adults undergoing chemotherapy, and she enjoys the prospect of helping other patients through her participation in research.”

 

Dr. Soto explains that Juana is a wonderful and energetic patient who is the perfect example of how navigation can help cancer patients move through a complex system to receive timely cancer care – with amazing results! Not only has Juana successfully started her cancer treatment, but she is now enrolled in public health insurance and is an active participant in other studies that aim to help patients just like her complete chemotherapy.

 

“Juana is very grateful for the help Wendy gave her and is happy with the whole navigation team,” says Dr. Soto. “But we are even more grateful for her amazing participation!”

 

Juana with Paty, the patient navigation project coordinator

Juana with Paty, the patient navigation project coordinator in Mexico City

5 Ways Patient Navigators Are Helping Women in Uruguay

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.

Why Do LMICs Need National Cancer Control Plans?

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.

Connecting Cancer Control and Culture

Sarah is an intern at GCI and a junior at Tufts University studying International Relations and Community Health. At GCI, Sarah helps manage Global Tumor Board videos and finds fascinating and informative material to share on GCI’s social media platforms (be sure to follow us on Twitter, Facebook, and LinkedIn!)


 

If you were looking for a make-it-yourself cure for a headache, then my neighbor’s mom was sure to have the answer. She often used certain fruits, powders, or herbs from her home country, Pakistan, for fatigue and a variety of other common ailments. Growing up in a small, diverse suburb in Maryland, I encountered an array of traditional medicines, including some from my own household, and I still enjoy learning about them. Naturally then, I was pleased to read Oswaldo Salaverry’s article, “Back to the roots: traditional medicine for cancer control in Latin America and the Caribbean.”

The article, which precedes GCI’s Lancet Oncology commission, “Planning Cancer Control in Latin America and the Caribbean,” calls on medical and public health professionals to recognize and incorporate traditional medicine into Latin American cancer control. This might be done, for example, by engaging traditional healers in cancer prevention or diagnosis.

Traditional medicines are more popular than you may think. Salaverry notes that about 65% of the globe uses traditional medicine in some capacity according to WHO. When traditional medicine is so ubiquitous, ignoring it risks alienating many people. It’s time to bridge the gaps between “modern” cancer care and traditional medicine through culturally tailored health interventions and plans.

Leave a comment below on a health-related cultural practice you’ve grown up with or encountered over the years!

Cervical Cancer Control in Latin America

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:

  1. 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.

 

  1. 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%.

 

  1. 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.