UC Santa Barbara

This dissertation draws on economic, medical, and cultural sociology theories to examine how pharmaceutical companies, physicians, and patients contend with the moral dilemmas posed by the rising cost of medicine in the US. These moral problems include the valuation of treatment, the charitable deservingness of patients, and, ultimately, the worth of lives. In the following research, I use three case studies to theorize the transformation of the US healthcare system from one that is market-based to one that is charity-based. My multilevel analytic approach leverages strategically selected case studies to generate theoretical insights across institutional, organizational, and individual experiences of medical treatment. At the national level, I qualitatively analyzed 32 congressional hearing transcripts from 1959-2020 and show that, as pharmaceutical companies substantially raised prices, executives stopped arguing that medicines were affordable or reasonably priced and instead justified prices by arguing that medicines were accessible though charitable assistance programs. I argue that this change in price justifications allowed pharmaceutical executives to recategorize patients from consumers to charity recipients. Then, I extend my analysis to the organizational level to better understand how charitable access to essential treatments for prescription drugs have affected patients and clinicians. I find that clinicians do rely on patient assistance programs to deliver essential care to patients, but this comes at a price for clinicians. Based on 43 interviews with oncology clinicians about the moral and financial issues that arise during cancer treatment, I find that charitable assistance frequently fails the most vulnerable patients, including low-income and undocumented patients. These failures produce feelings of moral stress among clinicians, or the inability to act according to their core values and perceived obligations due to external constraints. Finally, at the individual level, I conducted a qualitative content analysis of 1,666 US-based GoFundMe campaigns for individual colorectal cancer patients. I find that campaign organizers draw on different narratives of deservingness depending on their relationship to medical debt and bills. I argue that these narratives reflect the organizers’ social location and relative financial precarity within the US healthcare system.