The tip of the iceberg? Budget restrictions and patient perspectives on cancer drug costs: An international survey in 29 hospitals and 56 patient organizations

Background: The rising cost of cancer drugs are a challenge for health systems, providers, and sometimes patients’ individual financial capacities. We conducted a survey in European countries on negotiation options for providers and effects of high costs on providers and patients. Patients and methods: We asked health care providers (members of the Organisation of European Cancer Institutes (OECI) hospitals) viewpoints on discount mechanisms, budget restrictions and patient related issues. Secondly, representatives from the member organisations of the European Cancer Patients Coalition (ECPC) were approached concerning consequences for patients, such as access and receiving appropriate treatment. Results: Response rates were 38% for OECI and 11% for ECPC. Among 29 participating OECI members, a wide range of discount mechanisms and payments methods are being used in cancer drug purchasing processes. 90% (26/29) of institutions allow joint drug price negotiations; however, only 69% (18/26) use this strategy Two-thirds of institutional responders are of the opinion that treatment choices are being affected by cost issues. 79% (n = 56) patient representatives of ECPC member organizations responded that patients may be missing out on best possible treatments due to high drug costs and 43% thought that patients may not be aware of that. Conclusion: Our findings revealed a lack of systematic approach towards purchasing agreements, and a limited use of potentially powerful mechanisms such as joint negotiations. Furthermore, a large majority of patient representatives (79%) and providers (66%) indicated that the drug cost issue is likely to influence treatments decisions. Access issues and coverage delays seem to be present in all countries regardless of level of GDP.