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

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.

Quality of life beyond measure: Advanced cancer patients, wellbeing and medicinal cannabis

“…As such, this qualitative sub-study was designed to elicit in-depth understanding of patients' expectations, experiences and perceptions of their own health and cannabis use (prior, current, and trial-related); inform future trials design; and explore patients' 1 conceptualisations of wellbeing and quality of life in the context of terminal illness. The results and analysis presented here extend on findings arising from this embedded research (Olson, Smith, Good, et al, 2022, Olson, Smith, Huggett, et al, 2022, drawing on the Deleuzo-Guattarian frame outlined above. We situate this analysis and discussion of its implications at a little-studied intersection comprised of embodiment, affect and sociocultural discourse in patient experiences; and of cancer, clinical trials and medical cannabis.…”

“…Each interview was recorded using a digital voice recorder and transcribed verbatim. Socio-demographic details-also reported elsewhere (Olson, Smith, Good, et al, 2022;Olson, Smith, Huggett, et al, 2022)-reflected a balance of characteristics: 47.91% (n = 23) male, 52.08% (n = 25) female; 81.25% living with a spouse or children, 14.58% (n = 7) living alone; and most common cancer diagnoses including breast (25% (n = 12)), prostate (20.83%, n = 10) and lung (14.58%, n = 7).…”

“…Nvivo 12 software facilitated data management and code organisation, resulting in seven core themes, with a further 6–10 sub‐themes each. This paper focuses on one core theme: wellbeing (for other findings, see Olson, Smith, Good, et al., 2022 ; Olson, Smith, Huggett, et al., 2022 ).…”

The Economic and Social Impacts of Providing Universal Healthcare in the United States: A Rapid Scoping Review

“…As with almost every potential impact of universal healthcare, impact on individual nances will depend on the exact formulation and package (13,24). There is overwhelming evidence that individuals in the US are foregoing care because of nancial limitations, both for those uninsured and for those underinsured or with prohibitively high deductibles or copays (3,4,9,12,19,(25)(26)(27)(28)(29)(30)(31)(32). Universal healthcare would eliminate the majority of this issue, though individuals still suffer nancial risk under universal healthcare systems (33).…”

“…Health expenses force over 100 million people worldwide into extreme poverty every year (57). Financial toxicity and concerns over medical expenses can happen under universal healthcare schemes, however they are more common in countries with private health insurance (32,33,48). Medical debt and medical bankruptcy are common in the US for uninsured and underinsured adults with medical expenses accounting for 19.3% of people living in poverty (1,4,25,26).…”