Toward an ethical future for orphan drugs: balancing access, affordability, and innovation
An ethical, sustainable OD ecosystem is achievable by pairing innovation incentives with equity-first operations. Priority next steps are to (i) expand outcomes-linked access and pooled-procurement pilots for high-cost therapies, (ii) accelerate rare diseases data visibility through ORPHA-code adoption, and (iii) embed patient co-leadership across research and policy so that geography and income no longer determine access to life-saving treatments.
Authors
- Kingsley Nwagu
- Kibuuka Muhammad
- Esther Ugo Alum (ORCID: https://orcid.org/0000-0003-4105-8615)
- Joseph Enyia Ekpang
- Christine Ainebyoona
- Patience Owere Ekpang
- Olisa Alfred Nwuruku
Institutions
- Funai Electric (Japan) (JP)
- Kampala International University (UG)
- Danish School of Media and Journalism (DK)
- Kampala International University in Tanzania (TZ)
- Federal Medical Centre (NG)
- Ebonyi State University (NG)
Publication Details
- Journal
- Journal of Medical Economics
- Published
- 2025-10-21
- DOI
- https://doi.org/10.1080/13696998.2025.2577514
- Citations
- 1
- Primary Topic
- Pharmaceutical Economics and Policy
- Type
- article
- Field-Weighted Citation Impact
- 3.13