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ethics and medicine and pharmaceutical policy – Position paper
see attachments
“More funding should be directed to developing medicines to help those with rare diseases”
Word count: 2500 words +/- 10%
Referencing format: Vancouver.
Task:
Write a position paper of the following thesis statement:
“More funding should be directed to developing medicines to help those with rare diseases”
Specify what your position is, put forward the strongest arguments for your position, and defend against the strongest arguments against your position.
position to defend: support
Support the arguments position based on utilitarian or deontological perspectives and link to ethical principles if appropriate. Indicate page where the idea is extracted from . example –
“……..” (1) [p.23]
See some papers below for references + add few more
Abstract [~200 words]
Provide a summary of your paper, including your conclusion.
Introduction [~350 words]
Provide background to the topic. Why is this an important issue to explore? Provide relevant context.
Define your terms [e.g. what do you mean by continuing education, or coverage with evidence development? Use references to show how these terms have been defined].
Give concrete examples of what you are talking about.
State what you aim to do in this position paper [e.g. In this position paper, I will argue for
the importance of …. ]
Argument(s) supporting your position [~1000 words] [Give this section an appropriate title; don’t say “arguments supporting my position”]
Develop your arguments in a logical and cohesive way. You can build upon the arguments you presented in your first assignment.
Defeat competing argument(s) [~800 words] [Again give this section an appropriate title]
Identify one or two of the strongest argument/s against the position you have decided to defend. Describe the argument/s and give some justification for why these are the strongest arguments against your case.
Explain why this/these counter-argument/s are not as strong as the arguments in support of your position.
Discussion/Conclusion [~150 words]
Briefly describe state your position and summarise why you take this stance.
Don’t provide new information in your Conclusion
References [Doesn’t count towards the word limit]
Support your argument with references and build on reasoning undertaken by other scholars. Reference your work consistently in line with an accepted referencing format – Use Vancouver.
Some papers to take ideas from:
1. Kacetl J, Marešová P, Maskuriy R, Selamat A. Ethical Questions Linked to Rare Diseases and Orphan Drugs–A Systematic Review. Risk management and healthcare policy. 2020 Oct 13:2125-48. https://doi.org/10.2147/RMHP.S260641
2. Gericke CA, Riesberg A, Busse R. Ethical issues in funding orphan drug research and development. Journal of Medical Ethics. 2005 Mar 1;31(3):164-8. https://doi.org/10.1136/jme.2003.007138
3. Taylor C, Jan S, Thompson K. Funding therapies for rare diseases: an ethical dilemma with a potential solution. Australian Health Review. 2017 Feb 16;42(1):117-9 https://doi.org/10.1071/AH16194
4. McCabe C, Claxton K, Tsuchiya A. Orphan drugs and the NHS: should we value rarity?. Bmj. 2005 Oct 27;331(7523):1016-9. https://doi.org/10.1136/bmj.331.7523.1016
5. Boy R, Schwartz IV, Krug BC, Santana-da-Silva LC, Steiner CE, Acosta AX, Ribeiro EM, Galera MF, Leivas PG, Braz M. Ethical issues related to the access to orphan drugs in Brazil: the case of mucopolysaccharidosis type I. Journal of medical ethics. 2011 Apr 1;37(4):233-9. https://doi.org/10.1136/jme.2010.037150
6. Kinney J. Health disparities: exploring the ethics of orphan drugs. American Journal of Health-System Pharmacy. 2014 May 1;71(9):692-3. https://doi.org/10.2146/ajhp130348
7. Encina G, Castillo-Laborde C, Lecaros JA, Dubois-Camacho K, Calderón JF, Aguilera X, Klein AD, Repetto GM. Rare diseases in Chile: challenges and recommendations in universal health coverage context. Orphanet Journal of Rare Diseases. 2019 Dec;14:1-8. https://doi.org/10.1186/s13023-019-1261-8
8. Drummond MF, Wilson DA, Kanavos P, Ubel P, Rovira J. Assessing the economic challenges posed by orphan drugs. International journal of technology assessment in health care. 2007 Jan;23(1):36-42. https://10.1017/S0266462307051550
9. ODs AT. Assessing the economic challenges posed by orphan drugs: A comment on Drummond et al. International journal of technology assessment in health care. 2007;23(3):397-404. https://doi.org/10.1017/S0266462307071012
10. Drummond MF, Wilson DA, Kanavos P, Ubel PA, Rovira J. Assessing the economic challenges posed by orphan drugs: a response to McCabe et al. International Journal of Technology Assessment in Health Care. 2007;23(3):401-4. https://doi.org/10.1017/S0266462307071024
11. Hughes DA, Tunnage B, Yeo ST. Drugs for exceptionally rare diseases: do they deserve special status for funding?. Qjm. 2005 Nov 1;98(11):829-36. https://doi.org/10.1093/qjmed/hci128
12. Picavet E, Dooms M, Cassiman D, Simoens S. Orphan drugs for rare diseases: grounds for special status. Drug Development Research. 2012 May;73(3):115-9. https://doi.org/10.1002/ddr.21005
13. Wang T, Scuffham P, Byrnes J, Downes M. Cost-effectiveness analysis of gene- based therapies for patients with spinal muscular atrophy type I in Australia. Journal of Neurology. 2022 Dec;269(12):6544-54. https://doi.org/10.1007/s00415-022-11319- 0
WHO
Parliament of Australia – Rare diseases
https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/N ewdrugs/Report/section?id=committees%2Freportrep%2F024755%2F77601
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