NCCS’s
2021 State of Cancer Survivorship Survey findings showed a higher burden of cancer across a range of physical, emotional, and financial measures for Hispanic/Latinx respondents. In this session, Shelley Fuld Nasso presented data from the survey and spoke with Dr. Duma and cancer patients and advocates about the needs and challenges facing the often-overlooked Hispanic/Latinx cancer survivors.
Dr. Duma opened her presentation with an explanation of the origin of this session’s title, “Estamos Aquí,” translated as “We are here,” which represents the thought that Hispanic/Latinx cancer patients are often forgotten. She emphasized some of the major health disparities experienced within the Hispanic/Latinx community as well as critical facts about the population’s culture, needs, and beliefs.
Dr. Duma explained that a critical issue for this population is their lack of utilization of palliative care. One study she shared found that only 2.2% of stage IV Hispanic/Latinx lung cancer patients were referred to palliative care, despite evidence that early integration of palliative care improves outcomes and even extends survival. Additionally, she stressed that Hispanic/Latinx patients are largely excluded from clinical trials but are treated with therapies approved for a mostly white population.
Dr. Duma attributed these problems to a number of factors. First, she argued, physician bias prevents providers from referring these patients to specific treatments because they believe patients are not interested. In reality, treatments like palliative
care or clinical trials haven’t been adequately explained to the patient, and they don’t understand the potential benefit to their treatment. Moreover, language can serve as a barrier between physician and patient. Finally, the myth that members of the
Hispanic/Latinx population are fatalistic and believe they were given cancer for a reason may lead providers to believe patients do not want to seek treatment. To address these issues, she recommended that physicians approach patients with cultural humility and include family in cancer treatment discussions.
Rebecca Esparza, two-time cancer survivor of 20 years and Roxana Guerra, who is living with metastatic breast cancer, shared valuable insights from the patient perspective. They agreed that family was important to the Hispanic/Latinx population and should be included in a patient’s care planning. They also discussed reasons why the Hispanic/Latinx community was underrepresented in advocacy and why cancer was a serious burden for this population. Reasons included a lack of paid time off work, lack of access to childcare, the strong connection to family and the habit of putting the needs of family above their own, lack of financial resources, concern about legal status, the language barrier, and the stigma in their community associated with cancer.
To close, Rebecca and Roxana stressed the importance of self-advocacy as a cancer survivor, encouraging cancer survivors to be their own best advocate. Roxana also shared that her son was “mi motor,” or motor that kept her going so she could continue to advocate for herself and see her son grow.