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Kostadin Kostadinov, Nina Musurlieva, Georgi Iskrov, and Rumen Stefanov, from the Medical University of Plovdiv (Faculty of Public Health, Environmental Health Division, Research Institute) and the Institute for Rare Diseases, have conducted a study on rare cancer policies in Bulgaria. This significant work has been published in the prestigious international journal Journal of Cancer Policy (Impact factor: 2.0).
Rare cancers, defined by an annual incidence of fewer than 6 per 100,000 cases, pose significant challenges due to their complexity, lack of expertise, and limited treatment options. In Bulgaria, these challenges are compounded by limited resources, fragmented care, and outdated policies. This study investigates policy stakeholders’ perspectives to identify gaps and propose policy alternatives for rare cancer care in Bulgaria, with implications for the broader European Union (EU) context.
A grounded theory qualitative research design was employed to explore stakeholder insights. Eight key stakeholders, including policymakers, healthcare providers, patient advocates, and pharmaceutical representatives, participated in semi-structured interviews. Data were analyzed through thematic coding to map policy gaps and develop viable alternatives.
Stakeholders highlighted significant gaps in funding, access to innovative therapies, and care organization. Four policy approaches emerged: Liberal, advocating for inclusivity and decentralized care; Conservative, emphasizing cost control and centralization; Balanced, integrating elements of both; and Status Quo, retaining the current system.
While centered on Bulgaria, these findings address universal challenges in rare cancer care, offering a framework adaptable to other EU countries. Adopting tailored policies can reduce disparities, improve patient outcomes, and align national strategies with EU objectives, particularly under Europe’s Beating Cancer Plan and the EU Cancer Mission.
