ArticleHealth care analysis : HCA : journal of health philosophy and policy2017
For the Sake of Justice: Should We Prioritize Rare Diseases?
Article in Health care analysis : HCA : journal of health philosophy and policy, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it, 37 citations in OpenAlex.
- A systematic review of moral reasons on orphan drug reimbursement.Orphanet journal of rare diseases · 2021Pooled it
- Article
- Priority-Setting and Values: A Qualitative Study of the Danish Medicines Council.Journal of bioethical inquiry · 2026Article
- A comparative ethical analysis of the Egyptian clinical research law.BMC medical ethics · 2024Article
- Principles for Just Prioritization of Expensive Biological Therapies in the Danish Healthcare System.Journal of bioethical inquiry · 2023Article
- Comparison of Rare and Common Diseases in the Setting of Healthcare Priorities: Evidence of Social Preferences Based on a Systematic Review.Patient preference and adherence · 2023Review
- The ethics of resource allocation in translational genomic medicine.Journal of community genetics · 2022Article
- Artificial Intelligence in Medical Imaging and its Impact on the Rare Disease Community: Threats, Challenges and Opportunities.PET clinics · 2022Review
- Sustainability principle for the ethics of healthcare resource allocation.Journal of medical ethics · 2021Article
- Ethical Questions Linked to Rare Diseases and Orphan Drugs - A Systematic Review.Risk management and healthcare policy · 2020Article
- Principles of Need and the Aggregation Thesis.Health care analysis : HCA : journal of health philosophy and policy · 2019Article
- Cost-effectiveness analysis of the use of letermovir for the prophylaxis of cytomegalovirus in adult cytomegalovirus seropositive recipients undergoing allogenic hematopoietic stem cell transplantation in Italy.Infection and drug resistance · 2019Article
- Priority rules as solutions to conflicting health care rights.Medicine, health care, and philosophy · 2017Article
- The (Ir)relevance of Group Size in Health Care Priority Setting: A Reply to Juth.Health care analysis : HCA : journal of health philosophy and policy · 2017Article
- Ethical imperatives of timely access to orphan drugs: is possible to reconcile economic incentives and patients' health needs?Orphanet journal of rare diseases · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This article is about the justifiability of accepting worse cost effectiveness for orphan drugs, that is, treatments for rare diseases, in a publicly financed health care system. Recently, three arguments have been presented that may be used in favour of exceptionally advantageous economic terms for orphan drugs. These arguments share the common feature of all referring to considerations of justice or fairness: the argument of the irrelevance of group size, the argument from the principle of need, and the argument of identifiability. It is argued that all of these arguments fail to support the conclusion that orphan drugs should be subsidized to a larger extent than treatments for common diseases. The argument of the irrelevance fails to distinguish between directly and indirectly relevant considerations of fairness or justice. The recent attempt to revive the moral relevance of identifiability has provided no novel reasons to think that identifiability is morally relevant in itself or due to considerations of fairness and justice. The argument from the principle of need does not fail due to any inherent flaw in the principle as such. Rather, this principle can be interpreted in different ways, and none of these interpretations support exceptionally advantageous terms economically for treating rare diseases specifically. It is concluded that we are awaiting justice based reasons for the preferential treatment of orphan drugs.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.