"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada


Autoři: Sarah J. Pol aff001;  Jeremy Snyder aff003;  Samantha J. Anthony aff001
Působiště autorů: The Hospital for Sick Children, Toronto, Ontario, Canada aff001;  Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada aff002;  Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada aff003;  Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, Ontario, Canada aff004;  Canadian Donation and Transplantation Research Program, Edmonton, Alberta, Canada aff005
Vyšlo v časopise: PLoS ONE 14(12)
Kategorie: Research Article
doi: 10.1371/journal.pone.0226686

Souhrn

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns.

Klíčová slova:

Finance – Health economics – Kidneys – Liver – Liver transplantation – Organ transplantation – Pediatrics – Renal transplantation


Zdroje

1. Helhoski A, Simons V. Seeking medical debt relief? Crowdfunding rarely pays the bills. Nerdwallet. 2016. Available from: https://www.nerdwallet.com/blog/loans/medical-debt-crowdfunding-bankruptcy/

2. McClanahan C. People are raising $650 million on GoFundMe each year to attack rising healthcare costs. Forbes. 2018. Available from: https://www.forbes.com/sites/carolynmcclanahan/2018/08/13/using-gofundme-to-attack-health-care-costs/

3. Sisler J. Crowdfunding for medical expenses. CMAJ. 2012;184(2): E123–E124. doi: 10.1503/cmaj.109-4084 22231688

4. Berliner LS, Kenworthy NJ. Producing a worthy illness: Personal crowdfunding amidst financial crisis. Soc Sci Med. 2017;187: 233–242. doi: 10.1016/j.socscimed.2017.02.008 28274601

5. Lukk M, Schneiderhan E, Soares J. Worthy? Crowdfunding the Canadian Health Care and Education Sectors. CRS. 2018;55(3): 404–424. doi: 10.1111/cars.12210 29984886

6. Newman M. Is cancer fundraising fuelling quackery? BMJ. 2018;362: k3829.

7. Canadian Institute for Health Information. Organ replacement in Canada: CORR annual statistics– 2018. Ottawa, ON: CIHI; 2018.

8. Levy AR, Sobolev B, James D, Barrable W, Clarke‐Richardson P, Sullivan SD, et al. The costs of change: direct medical costs of solid organ transplantation in British Columbia, Canada, 1995–2003. Value Health. 2009;12(2): 282–92. doi: 10.1111/j.1524-4733.2008.00445.x 18783395

9. The Canadian Lung Association. The cost of a lung transplant. 2017. Retrieved from https://www.ab.lung.ca/sitewyze/files/The_Cost_of_a_Lung_Transplant.pdf

10. Larson DB, Wiseman JF, Vock DM, Berglund DM, Roman AM, Ibrahim HN, et al. Financial burden associated with time to return to work after living kidney donation. Am J Transplant. 2019;19(1): 204–7. doi: 10.1111/ajt.14949 29799662

11. Murdoch B, Marcon AR, Downie D, Caulfield T. Media portrayal of illness-related medical crowdfunding: A content analysis of newspaper articles in the United States and Canada. PloS One. 2019;14(4): e0215805. doi: 10.1371/journal.pone.0215805 31013310

12. Henderson ML, Clayville KA, Fisher JS, Kuntz KK, Mysel H, Purnell TS, et al. Social media and organ donation: Ethically navigating the next frontier. Am J Transplant. 2017 Nov;17(11): 2803–9. doi: 10.1111/ajt.14444 28744966

13. Durand WM, Peters JL, Eltorai AE, Kalagara S, Osband AJ, Daniels AH. Medical crowdfunding for organ transplantation. Clin Transplant. 2018;32(6): e13267. doi: 10.1111/ctr.13267 29683220

14. Gonzales AL, Kwon EY, Lynch T, Fritz N. “Better everyone should know our business than we lose our house”: Costs and benefits of medical crowdfunding for support, privacy, and identity. New Media Soc. 2018;20(2): 641–58.

15. Snyder J. Crowdfunding for medical care: Ethical issues in an emerging health care funding practice. Hastings Center Report. 2016;46(6): 36–42. doi: 10.1002/hast.645 27875643

16. Berliner LS, Kenworthy NJ. Producing a worthy illness: Personal crowdfunding amidst financial crisis. Soc Sci Med. 2017;187: 233–42. doi: 10.1016/j.socscimed.2017.02.008 28274601

17. Snyder J, Crooks VA, Mathers A, Chow-White P. Appealing to the crowd: Ethical justifications in Canadian medical crowdfunding campaigns. J Med Ethics. 2017;43(6): 364–67. doi: 10.1136/medethics-2016-103933 28137998

18. The David Foster Foundation: Funding Guidelines. [cited 16 August 2019]. In Information for Families and Social Workers [Internet]. Available from: https://davidfosterfoundation.com/wp-content/uploads/2019/03/DFF-Funding-Guidelines-Brochure.pdf

19. Snyder J, Mathers A, Crooks VA. Fund my treatment!: A call for ethics-focused social science research into the use of crowdfunding for medical care. Soc Sci Med. 2016;169: 27–30. doi: 10.1016/j.socscimed.2016.09.024 27665200

20. Canadian Institute for Health Information. Canadian Organ Replacement Registry. Ottawa, ON: CIHI; 2019.


Článek vyšel v časopise

PLOS One


2019 Číslo 12