Crowd Funding for Orphan Drugs: The Case of Baby Pia

Medical crowdfunding is a relatively new strategy to obtain access to orphan drugs. The case of Baby Pia, a Belgian girl with SMA type 1 for whom in 2018 more than $ 2.1 million was raised to get her treated with Zolgensma(®), illustrates well the potential power of medical crowdfunding. But apart f...

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Detalles Bibliográficos
Autor principal: Pinxten, Wim
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2021
Materias:
Pharmacology
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8712947/
https://www.ncbi.nlm.nih.gov/pubmed/34970148
http://dx.doi.org/10.3389/fphar.2021.787342
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author Pinxten, Wim
author_facet Pinxten, Wim
author_sort Pinxten, Wim
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description Medical crowdfunding is a relatively new strategy to obtain access to orphan drugs. The case of Baby Pia, a Belgian girl with SMA type 1 for whom in 2018 more than $ 2.1 million was raised to get her treated with Zolgensma(®), illustrates well the potential power of medical crowdfunding. But apart from the success in raising money, the case is also of particular importance for the ethical issues it brings to the surface as related to justice, equity, power imbalances, responsibility, accountability, indebtedness and privacy.
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spelling pubmed-87129472021-12-29 Crowd Funding for Orphan Drugs: The Case of Baby Pia Pinxten, Wim Front Pharmacol Pharmacology Medical crowdfunding is a relatively new strategy to obtain access to orphan drugs. The case of Baby Pia, a Belgian girl with SMA type 1 for whom in 2018 more than $ 2.1 million was raised to get her treated with Zolgensma(®), illustrates well the potential power of medical crowdfunding. But apart from the success in raising money, the case is also of particular importance for the ethical issues it brings to the surface as related to justice, equity, power imbalances, responsibility, accountability, indebtedness and privacy. Frontiers Media S.A. 2021-12-14 /pmc/articles/PMC8712947/ /pubmed/34970148 http://dx.doi.org/10.3389/fphar.2021.787342 Text en Copyright © 2021 Pinxten. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pharmacology
Pinxten, Wim
Crowd Funding for Orphan Drugs: The Case of Baby Pia
title Crowd Funding for Orphan Drugs: The Case of Baby Pia
title_full Crowd Funding for Orphan Drugs: The Case of Baby Pia
title_fullStr Crowd Funding for Orphan Drugs: The Case of Baby Pia
title_full_unstemmed Crowd Funding for Orphan Drugs: The Case of Baby Pia
title_short Crowd Funding for Orphan Drugs: The Case of Baby Pia
title_sort crowd funding for orphan drugs: the case of baby pia
topic Pharmacology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8712947/
https://www.ncbi.nlm.nih.gov/pubmed/34970148
http://dx.doi.org/10.3389/fphar.2021.787342
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