Yaşamsal ilaçlara erişimde küresel eşitsizlikleri anlamak: Türkiye'de Zolgensma örneği

Despite the accelerated pace of pharmaceutical innovation, access to life-saving therapies remains deeply stratified, with availability shaped less by clinical urgency than by the imperatives of market profitability. This study analyzes the inaccessibility of the gene therapy Zolgensma for spinal muscular atrophy (SMA) patients in Turkey as a situated expression of global disparities in pharmaceutical access. It is based on 14 in-depth semi-structured interviews with caregivers, patients, clinicians, legal experts, and NGO representatives, complemented by analysis of secondary literature, policy documents, institutional reports, and public communications. Drawing on world-systems theory and Marxist-feminist critiques of care labor, it examines how exclusion is reproduced across global, national, and intimate scales, and how unpaid caregiving emerges as a structurally essential response to institutional abandonment—a form of "survival labor." By situating Turkey's semi-peripheral position within the global political economy, the study shows how monopolistic pricing, TRIPS-aligned patent protections, and fragmented healthcare provision collectively displace the burden of therapeutic procurement onto families, who are forced to either launch high-stakes crowdfunding campaigns or seek entry into the commercial life-cycle of the therapy via rare early access programs and clinical trials. Together, these findings illustrate how the global distribution of pharmaceuticals within the contemporary capitalist world-system continues to reflect and reinforce the geographies of inequality it claims to overcome.