ESPE Abstracts

Background: Solidarity-based healthcare systems face significant challenges due to the rising costs of new and highly expensive medicines for cancer and rare diseases. The Dutch government introduced the Coverage Lock (CL) policy in 2015 to restrict access to reimbursement for such drugs. The CL has raised controversy around its ethical acceptability. Some claim the CL is necessary to secure solidarity while others have pointed out that its leads to unfair inequalities in access to treatment. However, the CL has not been evaluated in light of the key ethical principles of solidarity and justice. This study aimed to explore citizens' views to validate and improve the CL policy, considering public support as vital for healthcare policy.

Methods: A mixed methods study was conducted comprising a survey among a representative sample of Dutch citizens to assess their views on the CL policy and gauge public preferences for funding decisions and responsibilities related to the CL. Additionally, qualitative interviews were conducted among stakeholders on their perspectives on the CL procedure for the medicine nusinersen, used in treating spinal muscular atrophy (SMA).

Results: The survey revealed that while a majority of Dutch citizens considered the CL policy unjustified, they preferred it over the presented alternatives. In real-world examples of expensive medicines, respondents cited effectiveness, lack of alternative treatment options, and improved quality of life as reasons for positive reimbursement decisions. Unfavorable cost-benefit ratios were the main reason cited for non-reimbursement, with some respondents viewing it as a means to convey that extremely high drug prices are unacceptable. Stakeholders identified emotional impact, procedure duration, transparency, patient-centered decision-making, and unequal access to expensive treatments as key issues related to the CL policy in the case of the drug nusinersen.

Conclusion: Dutch citizens generally support providing expensive medicines to patients in need within existing healthcare budgets. Consequently, they recognize the necessity of controlling access to reimbursement for such drugs. Respondents were remarkably unified in their reimbursement decisions in real-world examples of expensive medicines. Despite concerns, the CL approach has public support due to the lack of alternative solutions. Stakeholders emphasized the need for greater patient-centric decision-making, improved transparency, and faster implementation of conditional reimbursement programs.