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A discrete choice experiment investigating preferences for funding drugs used to treat orphan diseases: an exploratory study

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  • Mentzakis, Emmanouil
  • Stefanowska, Patricia
  • Hurley, Jeremiah

Abstract

Policy debate about funding criteria for drugs used to treat rare, orphan diseases is gaining prominence. This study presents evidence from a discrete choice experiment using a convenience sample of university students to investigate individual preferences regarding public funding for drugs used to treat rare diseases and common diseases. This pilot study finds that: other things equal, the respondents do not prefer to have the government spend more for drugs used to treat rare diseases; that respondents are not willing to pay more per life year gained for a rare disease than a common disease; and that respondents weigh relevant attributes of the coverage decisions (e.g. costs, disease severity and treatment effectiveness) similarly for both rare and common diseases. The results confirm the importance of severity and treatment effectiveness in preferences for public funding. Although this is the first study of its kind, the results send a cautionary message regarding the special treatment of orphan drugs in coverage decision-making.

Suggested Citation

  • Mentzakis, Emmanouil & Stefanowska, Patricia & Hurley, Jeremiah, 2011. "A discrete choice experiment investigating preferences for funding drugs used to treat orphan diseases: an exploratory study," Health Economics, Policy and Law, Cambridge University Press, vol. 6(3), pages 405-433, July.
    • Handle: RePEc:cup:hecopl:v:6:y:2011:i:03:p:405-433_00
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    1. LUYTEN, Jeroen & KESSELS, Roselinde & GOOS, Peter & BEUTELS, Philippe, 2013. "Public preferences for prioritizing preventive and curative health care interventions: A discrete choice experiment," Working Papers 2013032, University of Antwerp, Faculty of Business and Economics.
    2. Jeremiah Hurley & Emmanouil Mentzakis & Mita Giacomini & Deirdre DeJean & Michel Grignon, 2017. "Non-market resource allocation and the public’s interpretation of need: an empirical investigation in the context of health care," Social Choice and Welfare, Springer;The Society for Social Choice and Welfare, vol. 49(1), pages 117-143, June.
    3. Tania Stafinski & Jacqueline Street & Andrea Young & Devidas Menon, 2022. "Moving beyond the Court of Public Opinion: A Citizens’ Jury Exploring the Public’s Values around Funding Decisions for Ultra-Orphan Drugs," IJERPH, MDPI, vol. 20(1), pages 1-13, December.
    4. Moser, Riccarda & Raffaelli, Roberta, 2014. "Does attribute cut-off elicitation affect choice consistency? Contrasting hypothetical and real-money choice experiments," Journal of choice modelling, Elsevier, vol. 11(C), pages 16-29.
    5. Michael Clark & Domino Determann & Stavros Petrou & Domenico Moro & Esther Bekker-Grob, 2014. "Discrete Choice Experiments in Health Economics: A Review of the Literature," PharmacoEconomics, Springer, vol. 32(9), pages 883-902, September.
    6. Monika Wagner & Hanane Khoury & Jacob Willet & Donna Rindress & Mireille Goetghebeur, 2016. "Can the EVIDEM Framework Tackle Issues Raised by Evaluating Treatments for Rare Diseases: Analysis of Issues and Policies, and Context-Specific Adaptation," PharmacoEconomics, Springer, vol. 34(3), pages 285-301, March.
    7. Johanna Wiss & Lars-Ake Levin & David Andersson & Gustav Tinghög, 2017. "Prioritizing Rare Diseases: Psychological Effects Influencing Medical Decision Making," Medical Decision Making, , vol. 37(5), pages 567-576, July.
    8. Marta Trapero-Bertran & Beatriz Rodríguez-Martín & Julio López-Bastida, 2019. "What attributes should be included in a discrete choice experiment related to health technologies? A systematic literature review," PLOS ONE, Public Library of Science, vol. 14(7), pages 1-15, July.
    9. López-Bastida, J. & Ramos-Goñi, J.M. & Aranda-Reneo, I. & Trapero-Bertran, M. & Kanavos, P. & Rodriguez Martin, B., 2019. "Using a stated preference discrete choice experiment to assess societal value from the perspective of decision-makers in Europe. Does it work for rare diseases?," Health Policy, Elsevier, vol. 123(2), pages 152-158.
    10. Jeff Richardson & Angelo Iezzi & Gang Chen & Aimee Maxwell, 2017. "Communal Sharing and the Provision of Low-Volume High-Cost Health Services: Results of a Survey," PharmacoEconomics - Open, Springer, vol. 1(1), pages 13-23, March.
    11. Li, Zili & Washington, Simon P. & Zheng, Zuduo & Prato, Carlo G., 2023. "A Bayesian hierarchical approach to the joint modelling of Revealed and stated choices," Journal of choice modelling, Elsevier, vol. 47(C).
    12. Mortimer, Duncan & Peacock, Stuart, 2012. "Social welfare and the Affordable Care Act: Is it ever optimal to set aside comparative cost?," Social Science & Medicine, Elsevier, vol. 75(7), pages 1156-1162.
    13. Jennifer Whitty & Emily Lancsar & Kylie Rixon & Xanthe Golenko & Julie Ratcliffe, 2014. "A Systematic Review of Stated Preference Studies Reporting Public Preferences for Healthcare Priority Setting," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 7(4), pages 365-386, December.
    14. Oehlmann, Malte & Glenk, Klaus & Lloyd-Smith, Patrick & Meyerhoff, Jürgen, 2021. "Quantifying landscape externalities of renewable energy development: Implications of attribute cut-offs in choice experiments," Resource and Energy Economics, Elsevier, vol. 65(C).
    15. Kleinhout-Vliek, Tineke & de Bont, Antoinette & Boer, Bert, 2017. "The bare necessities? A realist review of necessity argumentations used in health care coverage decisions," Health Policy, Elsevier, vol. 121(7), pages 731-744.
    16. Mo Zhou & Winter Maxwell Thayer & John F. P. Bridges, 2018. "Using Latent Class Analysis to Model Preference Heterogeneity in Health: A Systematic Review," PharmacoEconomics, Springer, vol. 36(2), pages 175-187, February.
    17. Mike Paulden & Tania Stafinski & Devidas Menon & Christopher McCabe, 2015. "Value-Based Reimbursement Decisions for Orphan Drugs: A Scoping Review and Decision Framework," PharmacoEconomics, Springer, vol. 33(3), pages 255-269, March.
    18. Monika Wagner & Hanane Khoury & Jacob Willet & Donna Rindress & Mireille Goetghebeur, 2016. "Can the EVIDEM Framework Tackle Issues Raised by Evaluating Treatments for Rare Diseases: Analysis of Issues and Policies, and Context-Specific Adaptation," PharmacoEconomics, Springer, vol. 34(3), pages 285-301, March.
    19. Desser, Arna S., 2013. "Prioritizing treatment of rare diseases: A survey of preferences of Norwegian doctors," Social Science & Medicine, Elsevier, vol. 94(C), pages 56-62.
    20. Nicod, Elena & Annemans, Lieven & Bucsics, Anna & Lee, Anne & Upadhyaya, Sheela & Facey, Karen, 2019. "HTA programme response to the challenges of dealing with orphan medicinal products: Process evaluation in selected European countries," Health Policy, Elsevier, vol. 123(2), pages 140-151.

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