Seizing the opportunity: accessing the unaffordable standard of care in commercial clinical trials for advanced cancer in Chile

Background In oncology, the standard of care (SoC) is rapidly evolving, and increasingly unaffordable, prompting both patients and providers to enroll in commercial clinical trials as a means to access the SoC. The experiences of trial participants and their providers in Latin America remain largely unknown. We report their experiences and relationships of care(giving) within the trial in a cancer center in Santiago, Chile. We examine how the gaps in cancer care and the unaffordability of the SoC constitute drivers for enrollment. Methods We conducted a critical ethnography between January 2022 and June 2023. A total of 47 participants were interviewed (14 patients, four caregivers, and 29 providers), plus 200 hours of participant observation. Fieldnotes and interviews were analyzed with NVivo 12 using thematic content analysis. Results Findings were organized around the main theme of “Seizing the opportunity”, which describes how enrollment in a clinical trial is experienced as an opportunity to receive clinical care that is perceived to be superior to the care available outside the trial, both in pharmacological and non-pharmacological aspects. Subthemes include the psychosocial turmoil experienced by patients before entering the trial, their perceptions of the clinical trial as a financial solution, the caring relationships within the trial, and the downplaying of risks. Discussion We suggest an association between the global crisis of the unaffordability of innovative cancer therapies and the growing interest in industry-sponsored cancer trials. While clinical trials offer access to experimental treatments, in practice, they are often used to access the SoC, increasingly dominated by high-cost drugs.