Background The COVID-19 pandemic has been felt acutely in Latin America with several countries having among the highest numbers of SARS-CoV-2 cases and related deaths. Individuals living with underlying health conditions have an increased risk of severe disease or death from COVID-19. Patient advocacy organizations often provide supportive services to these individuals and can offer a unique perspective of the patient experience. The objective of this study was to assess the effects of COVID-19 on access to health services in Latin America, as reported by patient advocacy organizations representing individuals living with autoimmune, chronic, and noncommunicable diseases. Methods A cross-sectional study was conducted in August 2020 with patient advocacy organizations in Latin America to measure perceived effects from COVID-19 and reported access to health services among individuals living with autoimmune, chronic, and noncommunicable diseases. An original, online survey was developed and deployed in Spanish and Portuguese. Univariate and bivariate analysis was conducted across two main subject areas: perceived patient effects from COVID-19 and patient access to health services. The main outcomes of analysis considered patient access to care during COVID-19 based on type of chronic illness and geographical region in Latin America. Results A total of 81 survey responses were analyzed. A majority (83%) of patient advocacy organizations reported their patients experienced delays receiving their treatment and care services; 52% experienced delays of 30 days or more. Telemedicine was considered available, but not accessible to patients (37%) and a majority (76%) of patients faced challenges with electronic prescriptions. Patients were not likely to receive a multi-month prescription from their doctor (38%) or successfully fill it at the pharmacy (26%). Conclusions According to responses from patient advocacy organizations, individuals living with noncommunicable diseases in Latin America have faced unique challenges during the COVID-19 pandemic. As countries re-evaluate their health systems, it is critical that chronic diseases are considered so that all can fully realize the right to health.

BackgroundCOVID-19 has been felt acutely in Latin America with several countries having among the highest numbers of COVID-19 cases and deaths. The purpose of this study was to assess the effects of COVID-19 on access to health services in Latin America, as reported by patient advocacy organizations representing autoimmune, chronic, and noncommunicable diseases.MethodsIn August 2020, we conducted an online key informant survey in Spanish and Portuguese among patient advocacy organizations in 18 countries in Latin America. Univariate and bivariate analysis was conducted across two main subject areas: perceived patient effects from COVID-19 and patient access to health services. The main outcomes of analysis considered patient access to care during COVID-19 based on type of chronic illness and geographical region in Latin America.ResultsA total of 81 survey responses were analyzed. A majority (83%) of patient advocacy organizations reported their patients experienced delays receiving their treatment and care services; 52% experienced delays of 30 days or more. Telemedicine was considered available, but not accessible to patients (37%) and a majority (76%) of patients faced challenges with electronic prescriptions. Patients were not likely to receive a multi-month prescription from their doctor (38%) or successfully fill it at the pharmacy (26%).ConclusionsPeople living with noncommunicable diseases in Latin America have been seriously impacted by the COVID-19 pandemic. As countries re-evaluate their health systems, it is critical that chronic diseases are considered so that all can fully realize the right to health.

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Background: Globally, it is estimated there will be a 43% increase in breast cancer-related deaths from 2015 to 2030, largely as a result of cancer metastasis. Metastatic breast cancer (mBC) is the most advanced stage of breast cancer where the cancer has spread from the original site to other parts of the body. While resources are available for early detection of breast cancer, there is a lack of information and support for those with an advanced breast cancer diagnosis in Brazil. To address this need, Instituto Oncoguia developed the National Metastatic Breast Cancer Patient Support Network, the “More Life Network.” This research is part of the Network initiative and seeks to increase knowledge and support for patients living with mBC. Aim: The aim of this study is to examine the mBC patient journey through diagnosis, treatment and quality of life after diagnosis. Methods: In May 2018, we conducted a cross-sectional study of mBC patients in Brazil. Patients were recruited voluntarily through online platforms. A quantitative online survey instrument was used for data collection. Frequency analysis was conducted across the main subject areas: knowledge, diagnosis, treatment, and quality of life. Results: A total of 188 online surveys were included in the analysis. Participants represent 20 of 26 states in Brazil and have a mean age of 44. Of the 188 participants, 114 are members of the Network. Knowledge about mBC was assessed through patient self-reporting. Approximately one third of patients (32%) reported little to no knowledge of mBC. When a patient does have questions about their diagnosis and treatment, a majority (83%) seek information from their physician. The Network was also indicated as a resource referenced by patients (51%). To understand the cancer journey, questions focused on diagnosis, treatment, and quality of life. Twenty-two percent (22%) of patients stated the most complicated or longest step of their journey was identifying symptoms of metastasis. The process of diagnosis was challenging, as well. Thirty-six percent (36%) of patients reported their metastasis was an incidental (by chance) diagnosis and 30% had little or insufficient information about the possibility of metastasis. After diagnosis, only 17% of patients continued working, while 78% worked prior to diagnosis. During treatment, the greatest hurdles in the patient journey include a decline in quality of life (42%) and lack of understanding or access to information about mBC (31%). The life of the patient is also impacted after diagnosis and treatment. Sixty-eight percent (68%) of patients expressed fear of the future and 61% felt they could no longer do the activities they previously enjoyed. Conclusion: This research demonstrates the lack of available information specific to a mBC diagnosis and the need for additional support throughout the cancer journey for patients living with mBC. Current breast cancer resources do not adequately address these challenges.

Introduction Oncoguia, founded in 2009, is a cancer patient advocacy organization in Brazil that provides information and assistance to patients and families through programs, such as the National Support Program for Patients with Cancer, Canal Ligue Câncer. Launched in 2012, Canal Ligue Câncer is a toll-free hotline that offers support and personalized guidance about early detection, diagnosis, and treatment of cancer, navigating the healthcare system, and patients’ rights. The objective of this research was to conduct an analysis of the Canal Ligue Câncer database to better understand the needs of callers seeking information about breast cancer. Methods In this cross-sectional study, we retrospectively analyzed descriptive data from the Canal Ligue Câncer database (2013-2019). This data was collected by trained attendants who used a conversational, semi-structured script to assist callers, details of which are recorded in the database. Results A total of 11,137 calls were registered in the Canal Ligue Câncer database from 2013-2019. Callers requested information related to breast cancer (34%) more than any other cancer. This analysis considered 3,695 of these records; 3,072 (83%) came from cancer patients and 623 (17%) from family members, representing all 27 states of Brazil, predominantly from São Paulo (50%). At the time of the call, more than half (57%) of patients were actively in treatment, of which 41% were receiving chemotherapy, 23% hormone therapy, 9% had surgery, and 8% radiotherapy. These patients accessed their healthcare services through private health plans (48%) or the Brazilian public health system (46%). More than 1 in every 4 (29%) records described an advanced breast cancer diagnosis; 27% of which had advanced cancer at first diagnosis. Many (25%) indicated that breast cancer treatment affected the daily life of the patient. The most commonly impacted areas were related to emotional health (36%), work (22%), finances (16%), self-esteem (10%), and family (5%). The main motives for contact were to seek assistance in the realization of patients’ rights (57%), learn more about Oncoguia (16%), ask questions or report access barriers to diagnostic, treatment, and care services throughout each stage of the patient journey (15%), and request information about quality of life support (8%). Conclusion Oncoguia is a leading cancer patient advocacy organization in Brazil. Canal Ligue Câncer assists callers throughout the country who are seeking information about cancer through empathetic, active listening and offers easy-to-understand information and guidance to help callers overcome challenges. The aggregated data of the Canal Ligue Câncer database highlights trends and provides an important snapshot of common questions and challenges of the larger cancer community, which inform Oncoguia’s health education campaigns and advocacy initiatives. Our analysis demonstrated not only do breast cancer patients need information and assistance to navigate the healthcare and legal systems and to manage the impact of cancer in their lives, but support is also requested by family members. There is also a particularly high demand for information related to patients’ rights, which in Brazil often relates to the Law of 60 Days that guarantees patients begin treatment through the Brazilian public health system no more than 60 days after diagnosis. Further analyses will consider longitudinal trends and changes in the characteristics of callers, their questions, and challenges. Citation Format: Luciana Holtz de Camargo Barros, Anna Carolina Arena Siqueira, Meredith Kruse, André Marques dos Santos, Lycia TramujasVasconcellos Neumann. How can we help: The needs of those seeking breast cancer information and support from a cancer patient advocacy organization in Brazil [abstract]. In: Proceedings of the 2021 San Antonio Breast Cancer Symposium; 2021 Dec 7-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2022;82(4 Suppl):Abstract nr P3-15-04.