'What price do you put on your health?': Medical cannabis, financial toxicity and patient perspectives on medication access in advanced cancer.

Olson, RE; Smith, A; Good, P; Dudley, M; Gurgenci, T; Hardy, J

'What price do you put on your health?': Medical cannabis, financial toxicity and patient perspectives on medication access in advanced cancer.

Olson, RE Smith, A Good, P

Dudley, M Gurgenci, T Hardy, J

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Publisher:: Wiley
Publication Type:: Journal Article
Citation:: Health Expect, 2023, 26, (1), pp. 160-171
Issue Date:: 2023-02

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Field	Value	Language
dc.contributor.author	Olson, RE
dc.contributor.author	Smith, A
dc.contributor.author	Good, P https://orcid.org/0000-0002-8198-0375
dc.contributor.author	Dudley, M
dc.contributor.author	Gurgenci, T
dc.contributor.author	Hardy, J
dc.date.accessioned	2023-05-28T23:56:49Z
dc.date.available	2022-10-16
dc.date.available	2023-05-28T23:56:49Z
dc.date.issued	2023-02
dc.identifier.citation	Health Expect, 2023, 26, (1), pp. 160-171
dc.identifier.issn	1369-6513
dc.identifier.issn	1369-7625
dc.identifier.uri	http://hdl.handle.net/10453/170499
dc.description.abstract	INTRODUCTION: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. METHODS: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision-making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. RESULTS: Overall, participants supported making MC legally accessible as a prescription-only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict-if found effective-that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. CONCLUSIONS: These findings suggest that-despite a relatively robust universal healthcare system-Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears-and the systems sustaining them-may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision-making, perceptions and experiences.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Wiley
dc.relation.ispartof	Health Expect
dc.relation.isbasedon	10.1111/hex.13642
dc.rights	info:eu-repo/semantics/openAccess
dc.subject	1110 Nursing, 1117 Public Health and Health Services, 1701 Psychology
dc.subject.classification	Public Health
dc.subject.mesh	Humans
dc.subject.mesh	Medical Marijuana
dc.subject.mesh	Financial Stress
dc.subject.mesh	Australia
dc.subject.mesh	Health Services Accessibility
dc.subject.mesh	Neoplasms
dc.subject.mesh	Humans
dc.subject.mesh	Neoplasms
dc.subject.mesh	Health Services Accessibility
dc.subject.mesh	Australia
dc.subject.mesh	Medical Marijuana
dc.subject.mesh	Financial Stress
dc.subject.mesh	Humans
dc.subject.mesh	Medical Marijuana
dc.subject.mesh	Financial Stress
dc.subject.mesh	Australia
dc.subject.mesh	Health Services Accessibility
dc.subject.mesh	Neoplasms
dc.title	'What price do you put on your health?': Medical cannabis, financial toxicity and patient perspectives on medication access in advanced cancer.
dc.type	Journal Article
utslib.citation.volume	26
utslib.location.activity	England
utslib.for	1110 Nursing
utslib.for	1117 Public Health and Health Services
utslib.for	1701 Psychology
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/IMPACCT
utslib.copyright.status	open_access	*
dc.date.updated	2023-05-28T23:56:47Z
pubs.issue	1
pubs.publication-status	Published
pubs.volume	26
utslib.citation.issue	1

Abstract:

INTRODUCTION: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. METHODS: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision-making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. RESULTS: Overall, participants supported making MC legally accessible as a prescription-only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict-if found effective-that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. CONCLUSIONS: These findings suggest that-despite a relatively robust universal healthcare system-Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears-and the systems sustaining them-may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision-making, perceptions and experiences.

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