Insurance, Endometriosis and the use of medicinal cannabis in Australia: A qualitative analysis

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Public insurance coverage via Medicare is limited, so access to disability, trauma and private health insurance is critically important as claim proceeds can help fund private treatments like surgery, allied health care, medications and other living costs. Patients report improved symptom management and capacity to work when consuming medical cannabis for endometriosis, however we currently do not know how this impacts people’s ability to obtain, maintain and claim on these insurance covers nor how insurers are approaching these topics. Methods Small group and one-on-one interviews were conducted with two cohorts. One cohort consisted of ten endometriosis patients and the second cohort was comprised of nine life insurance sector stakeholders. We sought to understand how the challenges with diagnosis, treatments, co-morbidities, underwriting, product gaps, knowledge, and training on endometriosis and use of cannabis impacted experiences with insurances. Interviews took between thirty minutes to an hour and were conducted between April and December 2023. Data were analysed using thematic analysis. Results Insurers identified gaps in their knowledge concerning endometriosis prevalence and rates of medical cannabis use amongst their customer base, compounded by a lack of training on medical underwriting and claims management around these issues. Consumers highlighted inadequacies and inequities in insurance coverage and financial support for people with endometriosis, particularly those consuming medical cannabis. Improved public health funding to reduce those with endometriosis needing to access their private superannuation savings before retirement to fund essential treatments like surgery due to public hospital delays and underinsurance, was a near universal view expressed by participants. Conclusions Australian clinical and insurance medicine settings for endometriosis were found to be unfit for purpose. Systemic bias and underfunding of women’s medicine has influenced poor coverage in public and private insurances, leading to limited reimbursement settings for consumers with endometriosis compared to other chronic illness. Improving endometriosis evaluation techniques and updating guidelines on re-emerging interventions like medical cannabis are needed to improve access to financial reimbursement across public and private insurance domains. medical cannabis endometriosis life insurance health insurance insurance medicine underwriting Gender inequality Figures Figure 1 Background Endometriosis is a chronic inflammatory disease of unknown cause where endometrium-like tissue proliferates into other parts of the body, with detrimental effects on women’s functional status and physical, mental, social, and sexual well-being that can be disabling.[ 1 ] The disease is primarily found on the pelvic peritoneum, ovaries, bladder, and bowel as well as in the recto-vaginal septum, inducing a chronic inflammatory reaction which may result in scar tissue.[ 2 ] While accurate prevalence is difficult to determine, best estimates show that 11% [ 3 ]-14% [ 4 ] of women in Australia have endometriosis by the ages of 44–49, with most diagnosed during their early thirties. It is recognised as a significant public health issue requiring increased clinical awareness, research and management. [ 5 ] Endometriosis is responsible for at least 40,500 annual hospitalisations[ 4 ] and the economic cost of endometriosis is at least $ 30,900 per person per annum [ 6 ]. The disease has no cure and there are limited effective treatment options beyond surgery. [ 7 ] Even then, up to 28% of patients may require a repeated surgical procedure during the 10 years after complete excision of endometriosis.[ 8 , 9 ] Good quality life risk insurance contracts provide a financial safety net so that in the event of disability or major illness, including from endometriosis, or death, a financial cash cushion is available for those insured and their spouses or dependents (when applicable). This money may be used to pay down or service debt, replace lost income from being unable to work, fund medications and surgery. Private health insurance policies similarly are critical for people with endometriosis as it can cover some of the costs of treatment in a private hospital and other 'extras' (such as physiotherapy and pharmaceuticals like cannabis which are not generally registered as therapeutic goods nor eligible for reimbursement under Australia’s Medicare Pharmaceutical Benefits Scheme). The diagnostic delay in Australia is around 6.4-[ 10 ] to 8.2 years [ 11 ]. While diagnostic delay is decreasing [ 11 ], it is very likely that many women with endometriosis do not know they have the disease despite having symptoms. However due to a lack of diagnosis they will be unable to disclose their endometriosis to insurers. This means that many women may be borrowing money (for example to buy a home), and thus they and the community are exposed to significant financial risk and costs from underinsurance. There is an added complexity around cannabis use and insurance as people with endometriosis struggle to talk about their use of cannabis with insurers and their doctors.[ 12 ] This is a problem as about 10% of people with endometriosis in Australia use cannabis to manage their condition, meaning around 70,000 to 98,000 women in Australia consume cannabis for their endometriosis symptoms [ 13 , 14 ] Cannabis use for endometriosis in this cohort has been associated with improved work capacity and symptomatic management of pain, sleep, mood and appetite, outcomes which collectively suggest improved insurability.[ 12 ] However, qualitative insurance experiences amongst this cohort are unexplored, though we do know quantitatively that private health insurance ‘extras’ offer minimal reimbursement for private cannabis pharmaceutical script costs of cannabis.[ 15 ] Cannabis or cannabinoids are re-emerging as a class of drugs that support women with endometriosis, increasing their capacity to work and engage in everyday activities.[ 16 ] Insurance related research work is important therefore, due to the high rates of underinsurance in this population, disease prevalence, varying severity of endometriosis symptoms, and the high number of co-morbidities that are often present. [ 17 , 18 ] These issues also present complex medical underwriting assessment questions for life insurers, reinsurers, advisers and consumers. [ 19 ] Insurance Medicine, The Endocannabinoid System and Cannabis Insurance medicine , as a field, straddles preventive, clinical, and rehabilitative medicine, as well as public health to help decision makers perform health-related evidence informed determinations on diagnosis, prognosis and the effectiveness of interventions in the context of life and health insurance coverage.[ 20 , 21 ] It is distinguishable as a field from clinical medicine which seeks to examine, diagnose and treat patients.[ 22 ] The endocannabinoid system (ECS) is a key homeostatic regulator of physiological and neuromodulatory activity in humans, widely expressed in the female reproductive system, and modulation of the ECS (comprising the G-protein coupled cannabinoid 1 and 2 receptors, their endogenous lipid ligands (i.e., endocannabinoids), along with the enzymes involved in the synthesis or degradation of those endocannabinoids), has therapeutic potential in many conditions, including endometriosis.[ 23 ] ECS dysfunction in endometriosis is suggested to be characteristic of what is known as a ‘clinical endocannabinoid system deficiency’ syndrome.[ 16 , 24 – 27 ] In short, established mechanisms of ECS action suggest that for endometriosis, exogenous plant cannabinoids have a role in mimicking, increasing or suppressing the body’s own cannabinoids (or activity at associated receptors) where they are not otherwise in a state of homeostasis. People with endometriosis in Australia predominantly use delta-9 tetrahydrocannabinol cannabis flower and oil products, and cannabidiol preparations, to manage their symptoms with their sleep, pelvic pain, back pain, period pain, anxiety or depression and nausea described as ‘much better’, and report the complete cessation or significant reduction in use of opioids, other drugs and treatments.[ 15 ] Improved sleep, ability to do the activities of daily living (including socialising and exercise), enhanced appetite / food consumption and capacity to work has been seen, however costs of legal access and lack of public and private insurance product coverage has seen under-dosing reported.[ 15 ] Novel interventions like cannabis that may decrease pain,[ 28 , 29 ] reduce incapacity and workplace presenteeism may also improve productivity and lead to better and more stable income, insurability and the propensity to maintain and renew insurance policies.[ 30 ] Expanding the pool of insured lives improves gender equity by enhancing economic participation, financial literacy and the economic security of women in society (and those assigned female at birth, hereafter denoted as women).[ 31 , 32 ] With the exception of some limited research into the adverse discrimination experiences of life insurance applicants that have been the subject of genetic testing for certain hereditary diseases,[ 33 – 38 ] no Australian or international qualitative literature exists on the specific experience of endometriosis populations undertaking applications for (or claims on) insurance products. Women can develop frustrating relationships with financial and healthcare systems: from complex and long diagnostic processes, lack of treatment effectiveness, poor financial support mechanisms and persistence of symptoms which all contribute to a variety of challenges, compounded by negative cognitive patterns including emotional distress, catastrophising and fear-avoidance behaviours, which can amplify their experiences.[ 5 ] Due to the under researched nature of endometriosis in insurance medicine, this research undertakes an exploratory qualitative analysis of experiences with life risk insurance and private health insurance in those with endometriosis using cannabis and industry representatives providing them services. No research to date has assessed the impacts of endometriosis and cannabis on life and private health insurance in those with the disease, nor on those who provide insurance services to them. Our contributions and aims with this research were guided by the following research questions and themes: What are endometriosis patients’ understandings of life insurance and their views on other related covers like disability, trauma and income protection, and how did they obtain covers (e.g. automatically via a superannuation fund or employer, via a financial adviser or directly with an issuer)? And; What are industry and consumer experiences around disclosure of endometriosis (and cannabis use) with insurance companies in establishing or claiming on covers? And; What were industry and consumer thoughts on endometriosis as a condition being covered under more trauma insurance contracts across the sector? In researching these questions, we wanted to understand how the endometriosis cohort are being treated relative to other populations with chronic diseases during pre-assessments, advice, applications, and claims and whether underwriting and claims management guidelines are accurate when it comes to this condition and contemporary knowledge of the use of Cannabinoid Based Medicinal Products (CBMPs). For private health insurance, views from the patient perspective were sought on the role it plays or does not play in their financial management of endometriosis (e.g., like coverage for hospitalisation costs, allied health and pharmaceuticals). Self-management strategies for endometriosis in Australia are common [ 13 , 14 , 39 – 41 ], so we wanted to explore our respondents experience with, “extras cover” under private health insurance contracts such as for pharmaceutical reimbursement of non-approved CBMPs and other treatments such as pelvic pain physiotherapy. Similarly, given the high out of pocket costs of this disease, we also asked wanted to ask what our respondents from the insurance industry think about reports of endometriosis patients accessing their private superannuation retirement savings early to fund essential medical care like surgery treatments.[ 6 , 15 , 42 ] Methods Participants Insurance Stakeholders Seven small interview groups or one on one interviews were held with nine industry leaders (4 men, 5 women). Each had significant, senior level experience in their roles within life insurance in Australia including a chief underwriter (retail and group life insurance products); a national technical underwriting manager (who also represented a key member-owned and run industry association committee for underwriting and insurance medicine professionals in Australia); a chief medical officer for mental health (claims and psychology); two business development managers; and four licensed, experienced life risk specialist financial advisers. Three people had lived experience with endometriosis themselves or had a close relative with the disease. All had thirteen years or more experience dealing with thousands of Australian insureds surrounding life insurance in financial advice, underwriting, medical consulting and claims management settings. Consumers with endometriosis Four small interview group sessions with consumers were held with a total of ten participants who have endometriosis, to provide feedback on their experiences with insurances. All were diagnosed by surgery and seven of the participants consulted three or more doctors before receiving an endometriosis diagnosis. Participants were from urban and rural areas from Australia’s most populated States. Table 1 shows the key demographics of the participating consumers. Table 1 Survey Demographic Data of Consumer Respondents N = 10 Median (IQR) Mean (SD) Current age 35 (5.9) Annual work-based income ( $ AUD) $ 145,000 Years since diagnosis 5 (7.7) Stage of endometriosis at most recent laparoscopy n (%) Stage 4 (severe) 5 (50) Stage 3 (moderate) 1 (10) Stage 2 (mild) 1 (10) Stage 1 (minimal) 2 (20) Unsure/Don't know 1 (10) Highest Education Level n (%) Diploma 1 (10) Bachelor's Degree 8 (80) Master's Degree 1 (10) State of Residence in Australia n (%) Queensland 4 (40) New South Wales 4 (40) Victoria 2 (20)* Resides in Rural or Urban Area n (%) Rural 4 (40) Urban 6 (60) Previously used cannabis medically prescribed or illicit for any reason? n (%) Yes 9 (90) No 1 (10) *One VIC participant moved to New Zealand after claiming on insurance and completing survey. Other demographic points of relevance were that of the ten participants, two identified as non-binary (all others as women) and one was an indigenous Australian. When asked about their experience with insurances, all respondents advised as follows: Table 2 - Consumer experience with endometriosis and insurances Ever had any of the following types of insurance? N (%) Life TPD Trauma Income Protection Private Health Insurance Never had it 3 (30) 2 (20) 9 (90) 3 (30) 0 (0) Currently have it 5 (50) 5 (50) 1 (10) 6 (60) 10 (100) Had it previously but not currently 2 (20) 3 (30) 0 (0) 1 (10) 0 (0) Ever had any issues or difficulties when obtaining cover or altering your existing life risk insurance cover related to endometriosis? n (%) Yes 3 (30) No 4 (40) No response 3 (30) The first author who chaired all sessions with industry and consumers has 16 years of experience as a senior financial adviser specialising in life risk insurance advice, and claims for individuals and enterprises domiciled in Australia, and is also a practicing lawyer. Procedure The study was approved by the Western Sydney University Human Research Ethics Committee (approval number H15099) and the design protocol for research involving humans was in accordance with guidelines of the National Statement of Ethical Conduct in Human Research. It formed part of the second phase of a wider fixed and emergent mixed methods multiphase project.[ 43 ] In the first phase we undertook cross sectional surveys of patients and insurer experiences on endometriosis, cannabinoids and insurance and have published some of this work separately.[ 12 , 15 ] A combination of snowballing and convenience sampling occurred via email invitations containing the survey link sent across various professional networks of the authors, and social media site posts including on Facebook, Instagram, LinkedIn and X (formerly Twitter).[ 44 ] In this second phase, we conducted qualitative interviews with the two distinct groups recruited from a sub-set of respondents from the initial online surveys: Endometriosis patients and insurance industry stakeholders. Consumer participants were purposively selected on the basis of self-reported age (> 18y/o) and a medical diagnosis of endometriosis by a health practitioner. In small interview groups or one-on-one interview settings, topics explored included their lived experiences, opinions, concerns, and wishes with regard to life risk & private health insurance covers including how cannabis use impacted those experiences. The consumer sessions were researcher guided and informed by the prior survey research results. Steps were taken to provide anonymity throughout this process which was important due to the sensitive nature of the subject matters of discussion (including medical/financial information and the potential for disclosure of non-medically prescribed cannabis use and therefore criminal liability risks). The interviews took place via zoom with between one to eight people per group, with ten respondents in total. Specific issues were then explored to generate data on matters like disclosure, underwriting outcomes, issues of conjecture (e.g., CBMP use results in ‘smoker rates’ or ‘non-smoker rates’), private health insurance reimbursement for the cost of their CBMPs and how patients fund surgery costs and experience claims. Nine life insurance industry stakeholders (financial advisers, underwriters, medical officers and business development professionals) participated in non-anonymous small group interviews or one on one sessions. These sessions covered financial advice, underwriting / claims standards and guidelines on endometriosis and CBMP use. The responses were discussed, compared, and then contrasted in more detail to understand if either endometriosis or cannabis use were actual or perceived barriers to the purchase and usage of various insurance products in this insurance population and to see if there were needs for product innovation, training, tools and resources to be developed for insureds, advisers and insurers. Supplementary File A1 provides the questions used as starting points across the groups. Analysis Responses attribution with line-by-line coding followed by a thematic analysis using Braun and Clarke’s six-phase process for data engagement, coding and theme development was conducted.[ 45 ] This thematic analysis was not intended to be ‘rigid’ as it was conducted within a pragmatic worldview paradigm.[ 46 , 47 ] This positioning was important to align with the exploratory aim of understanding experiences to improve insurance medicine real-world evidence based underwriting and claims outcomes for endometriosis and CBMPs, and to make recommendations for how insurers could work better to improve coverage and support for people with the disease. In the first data analytic phase, primary author (AP) de-identified the transcripts and collated these into Word documents. AP (re)read these transcripts and noted key reflections, observations and reactions. AP met with all other authors to review the data. In the second phase, AP generated initial codes into one Excel document. Generated initial codes were in the left column of a table, while preliminary themes were built. For consumers, all quotes are presented with a pseudonym and the participant’s age. For all professionals, their job title was used. The overarching theme was that endometriosis is an expensive, underreported, misunderstood, costly disease to manage with poor public and private insurance coverage . For the consumer cohort these themes across the different insurances and their underlying ‘thematic definitions’ emerged as follows in Table 1 : Table 1 Themes and Sub-Themes from Consumers Theme Sub-Themes 1 Navigating Insurance Complexity (Thematic Definition: Struggles to understand and manage insurance) I have limited understanding of life and disability insurance policies. I am unaware of terms, exclusions, and how to access support I have exclusions for endometriosis , mental health, and other chronic conditions I am frustrated with being denied temporary disability insurance due to prior diagnoses and the providers’ lack of understanding I have difficulties in contacting insurers and navigating claims processes. I have experienced lengthy delays in approvals and disputes 2 Financial Vulnerability (Thematic Definition: High financial burden from medical costs) I experience high out-of-pocket costs for surgeries, allied health, and treatments I get limited rebates for essential therapies like medicinal cannabis . I think extras cover is valuable for therapies such as acupuncture, physiotherapy, and psychology 3 Barriers in Claims and Coverage (Thematic Definition: Difficulties with claims and pre-existing condition exclusions) I have had positive experiences with insurer programs that offer discounts and rewards I feel discomfort in disclosing sensitive conditions like endometriosis and treatments like cannabis. I feel employer-provided insurance is important in easing costs I think hospital cover reduces some costs but I still incur significant expenses. 4 Value and Limitations of Private Health Insurance (Thematic Definition: Private health insurance plays a critical role in accessing faster treatment and allied health, but hospital cover was often inadequate) I feel frustration with insurance I rely on therapies like osteopathy, acupuncture, and physiotherapy for pain management 5 Holding Coverage for Complementary Therapies is Essential (Thematic Definition: Private insurance supports care but has limitations) I regularly use these therapies to maintain quality of life despite high costs For the industry cohort, a different picture of themes emerged reflecting their experiences with endometriosis and insurance as shown in Table 2 . Table 2 Themes and Sub-Themes from Industry Stakeholders Theme Sub-Themes 1 Systemic Gaps in Insurance Policies (Thematic Definition: Life risk insurance policies fail to adequately address the coverage needs of endometriosis sufferers, particularly trauma insurance) Clients won't get a claim under Total and Permanent Disability (TPD) or trauma. Clients are just left to handle it on their own. Clients obtaining cover without exclusions is near impossible. Even with trauma benefits, the payouts for clients are inconsistent and exclusion-heavy. For clients and insurers, severity-based payouts undervalue the chronic nature of endometriosis. 2 Gender and Social Dynamics (Thematic Definition: Gendered assumptions and stigma worsen the experiences of women with endometriosis) Clients feel dismissed as ‘it’s just period pain…’ People generally - and insurers - don’t understand how life-altering it is. Clients may avoid disclosing it at work and to insurers and to doctors because of judgment and stigma. Client’s feel caught between proving they’re well and not wanting to be seen as weak. Insurers and community perceive endometriosis as a private issue rather than a legitimate health condition. Insurers and community dismiss it as period pain... It is far more impactful on women’s lives than that. 3 Personal Cost of Endometriosis as a Chronic Illness (Thematic Definition: The disease creates profound physical, emotional, and financial burdens) Clients absorb the cost of the surgeries, the cost of IVF, and the time off work. This can be devastating. Clients managing this condition can feel like it is a second job—without any benefits and only costs. Clients spend tens of thousands on treatments that aren’t covered. Clients living with this condition find it exhausting; they never fully recover. 4 Challenges in Underwriting and Claims (Thematic Definition: Underwriting processes struggle to accommodate the variability of endometriosis) Client ultrasound findings can be identical for two women, but their symptoms are worlds apart. Insurers just don’t have the data to fairly assess these disclosures and claims. Severity varies between clients, making it hard to assess. Insurers lack tailored guidelines on medical use of cannabis that make it impossible to assess risks accurately. Clients often give up after their applications are delayed or denied. Insurers look to clinical medical fraternity who don’t connect symptoms to endometriosis for years. 5 Opportunities to innovate and provide better coverage for endometriosis (Thematic Definition: Innovation is needed to ensure insurance policies adequately cover endometriosis) Trauma payouts should consider hysterectomies or chronic disability caused by endometriosis. Insurers need to modernise their products to match current medical knowledge. Partial [trauma] benefits are a start, but they’re not enough for severe cases. We need products and models that prioritise patient outcomes over profit margins. AP then met with authors (SD and MA), and AP and SD further refined the initial codes and corresponding data across the two cohorts based on conceptual similarity and located latent themes to develop three condensed big picture themes from Tables 1 and 2 into those outlined in Fig. 1 below. ChatGPT4o was used by the first author to validate our editing and theme identification in Fig. 1 with the output broadly consistent with our thematic mapping findings, though it lacked nuance. Data Trustworthiness The framework of Lincoln and Guba was followed to establish trustworthiness in our data.[ 48 ] As insider researchers, we have engagements with the groups of interest across insurance, consumers (patient support groups) and industry providing us with a deep understanding of the context adding credibility to the work. The findings may have global transferability for women in other jurisdictions, but they will likely most resonate in women with endometriosis in places where private and public health funding for management of the condition is poor. We expect that insurer experiences, given the dearth of evidenced based insurance medicine guidance on CBMPs, will be consistent given the way global reinsurance guidelines are developed and disseminated, but details of underwriting responses will change in different international jurisdictions due to differing legal status and approaches to cannabis as medicine. The emotional experiences of patients around insurance coverage for endometriosis and its treatment are likely to be consistent (which is that it is generally lacking and it causes personal financial distress) given its prevalence in 180 million people globally.[ 49 ] The senior last author MA reviewed the process of AP and SD and conclusions to ensure the development of robust results and we confirmed of our findings together by reflecting on the research process in fortnightly group discussions, discussing how it was unfolding and how our personal subjectivities shaped our interpretations.[ 50 ] Positioning the Self: Subjectivities and Insider-Outsider Status The primary author’s subjectivities played a significant role in the conception, design, analysis, and structure of the insurance aspects of this research which were then shaped by the whole team’s collective research values, ethics, expertise and experiences across the gendered dynamics of business, women’s health and pharmacognosy research. Aspects of the industry data reflected validation of the primary author’s ‘insider’ status as an adviser that highlighted common difficult experiences obtaining cover for women with the disease and perceived lack of training and evidence informed decision making around CBMP use in insurance settings. The other authors had outsider positioning as "pharmacognosy researcher" and "academic" and “subject matter” experts on the non-insurance related issues, enabling more nuanced, inquisitive perspectives to support the primary author such that the collective deep expertise lay across related fields of the institutional context of gender equity, women’s reproductive health and cannabis as medicine domains. Results The three key condensed themes (from Fig. 1 above) that emerged from the data analysis were: ‘Insurance barriers and systemic gaps’, ‘Gendered assumptions and social stigma in insurance and healthcare’ and ‘The Financial and Emotional Toll of endometriosis.’ Together these three themes reflect that the medical and insurance systems in Australia are not providing adequate financial support to people with endometriosis with significant consequences for the community. The key experiences and issues surrounded the following: policy exclusions for endometriosis and its co-morbidities, claim difficulties, challenges assessing severity, and lack of product innovation / coverage. a perception of endometriosis as minor (‘just a period’), people are reluctant to disclose (endometriosis and cannabis use) when applying for cover and a general lack of ‘insurance medicine recognition’ of the disease. These contribute to high out-of-pocket costs, financial concerns, and have long-term health and prosperity impacts. Insurance Barriers and Gaps Systemic complexity, gaps in access and cover under insurance policies This underlying theme reflects the intersection of how inadequacies in clinical medicine management, from diagnosis to treating endometriosis (e.g., delays in diagnosis and surgery), ‘spills over’ into insurance medicine information asymmetries as between consumers and insurers, causing gaps in coverage for the disease. Uncertainties around access to financial advice, the disease itself, symptom management, and approach to the use of novel treatments in policy application and claim settings was evident across consumers and industry. Systemic barriers in diagnostics and treatments prevent fair and adequate coverage for endometriosis (including warranted or non-warranted imposition of loadings, exclusions, misalignment with the needs of consumers, and insurer reluctance to modernise offerings). The implications of this are consumers are disadvantaged, and the industry have gaps in their knowledge, products and internal processes. For our consumer participants, these uncertainties and inadequacies in endometriosis management meant that they found it difficult to understand and secure affordable underwritten life insurance coverages on fair terms, especially with co-present pre-existing conditions (a common experience among women with endometriosis). Ruby, age 30–35, highlighted the lack of targeted questioning and tailored information from insurers, saying, “It was hard to figure out where endometriosis fits—chronic pain or gynecological problems?” This also speaks to the lack of specific and detailed knowledge by insurers about endometriosis. General gaps in understanding of insurance coverage emerged (such as product exclusions and loadings), particularly related to superannuation-based life insurance covers and chronic conditions. Alice, age 35–40, noted, “I didn’t even know what I had until I needed it.” Most consumers obtained access to life, tpd and income protection insurance via their superannuation fund: "I obtained mine through my government super. So I was working Federal for a while...I increased it before I left that job, which I think in hindsight was probably a pretty good move. I did not go shopping around; just took the win on the government." [Kat, 35–40] This highlighted the critical importance of automatic acceptance for death and tpd insurance cover that is given to consumers via superannuation upon joining an employer default fund at the commencement of employment. However, many of our respondents were unaware of its existence in their member accounts, its breadth or its cost. “I rang the super company just to talk about my actual super, and then I found out that I was already paying for life insurance, etc. So I kind of talked to them about that and just did the levels. It wasn’t without advice. It was just through that [super company].” [Alice, 35–40] Some also were prompted to access insurance when obtaining a mortgage or via advice from a financial adviser. There are about 16,000 registered financial advisers in Australia but of these, only 7% focus primarily on writing life risk insurance, 15% write some life risk insurance, and 78% write little to none which makes it a challenge for the community to access financial advice on insurance. This highlights the relevance of other insurance distribution channels like banks when consumers take out a mortgage for a property purchase: "Life insurance was a requirement for my bank when we went into the mortgage process. They didn’t really give us an opportunity to shop around...so we just had to go out and get it through them. There were exclusions because I had anxiety, about what I could get. I haven’t looked into it since. I think there are probably better options out there now that I could shop around for."[Ruby, 30–33] Many consumers don't really know what they should be doing or asking for, either due to a lack of knowledge or being forced to rely on certain providers. When medically underwritten in taking out cover, some participants (but not all) faced coverage denial or exclusions related to endometriosis (e.g., including for co-morbidities like anxiety). The role of advisors, banks and superannuation funds in simplifying insurance decision-making, knowledge communication and assisting clients in cover pre-assessments, price/product comparisons was recognised. “I haven't set up life insurance just yet. Looking into it with my partner to see what suits our family best. However, I also do have like an income protection insurance setup through my original home mortgage from when I first bought my first property.” [Anna, 30–35] The accounts above speak to the highly varied consumer experience and disparities in insurance literacy. Matilda’s experience here shows that her choices were limited due to endometriosis coupled with adverse mental health history as pre-existing conditions, but an adviser helped her: "We got life insurance as part of a bundle deal through an advisor. The advisor did a lot of the research for us. We did our own research to compare what the advisor was saying, and we were quite happy with that advice. There were only two companies we could really consider with both my endometriosis and extensive medical history. I've got a whole heap of exclusions around mental health and suicide and all of that kind of thing which makes it quite difficult… but nothing explicitly endometriosis for life insurance other than disability " [Matilda, 25–30] Usava, reinforced the typical medical underwriting experience that highlights the difference between how disability covers like tpd and income protection are assessed by life insurers (compared to life and trauma benefits) when endometriosis is disclosed at application stage. It reflects an information imbalance or asymmetry (the insurance companies know what all these things are and how they make decisions whereas consumers don't really understand complex health interactions with financial products, decision making and the “system”): “I am not sure how it works. For disability, my endometriosis is an exclusion, but for everything else they haven’t worried too much about it." [Usava, 40–45] For the industry, gaps in training, expertise and evidence-based insurance medicine knowledge about endometriosis, the endocannabinoid system and cannabinoids as medicines was evident. The following quotes speak to the complexity of assessing endometriosis and associated conditions as well as the complex nature of treatment options: "It’s trying to identify. If that kind of sits within a continuation of the same condition, or does it actually, there may end up medical plus and mental disorder? And so therefore if it's two separate conditions looked at from the matrix, the guidelines, and underwriting from a claims perspective." [Chief Underwriting & Claims Officer] “For not easily classifiable conditions there are these interconnectivities between it and other diseases or other impairments. It’s referring through to the medical specialist to see if the person is in receipt of evidence-based treatment, and that's always on an individual basis.” [Technical Underwriting Manager ] In spite of the wide prevalence of endometriosis in the Australian community, the insurance companies are seeing low levels of disclosure in applications. It’s unclear if it’s a lack of knowledge on the part of the consumer on what they need to disclose, wilful non-disclosure, poor questioning by insurers and advisors on knowing what to ask or a combination of some or all of the above. This may also in part be due to the impact of delays in diagnosis and low levels of endometriosis training in underwriting at Australian Life Underwriting and Claims Association (ALUCA) events: “We don't see it very often. These conditions. So then, that's not a topic. Most of the time ALUCA will be covering your cardiac, your high blood pressure, your abnormal blood test. So I would say, minimal training on that aspect only enough for them to just know the name, so that if they get a call or a pre-assessment they know that this needs to go to this CMO. And chief medical officers are very heavily relied on.” [Technical Underwriting Manager ] The uncertain impact of the high number of comorbidities on insurance outcomes in those with the disease and the evolving role of algorithmic underwriting / big data in assessment outcomes were underlying themes that intersected consumer and industry sentiments: “This condition presents different, because it's different for different women... even having ultrasound evidence or anything else to test the severity sometimes doesn't really indicate the impairment. I think that the diagnosis, the treatment, and the recognition that it is a chronic disorder. It's not just some female problem.” [Chief Medical Officer – Psychology and Mental Health] The trustworthiness, openness and quality of evidence in health-related data questioning techniques of insurers is impacted by diagnostic and disclosure gaps in clinical medicine.[ 51 ] The biomedical model of insurance medicine considers observed pathology, impairment, or dysfunction to cause disability, while scholars and disability advocates who subscribe to a more social model assert that it is societies construction of disease that disables people who have impairments.[ 52 ] The ‘hidden’ nature of endometriosis and diagnostic lag creates gaps in data that may perpetuate a reductionist bias of a purely bio-medical model[ 53 ] of underwriting endometriosis at the expense of broader considerations, best expressed in this quote: “it's underwritten predominantly on the bio medical model. We don't take in the bias, like a social model in looking at it, and we would probably gain a lot more information if we really did that and wouldn't have necessarily a whole level of the exclusions that I see as unnecessary.” [Chief Medical Officer – Psychology and Mental Health] Gendered assumptions and social stigma in insurance and healthcare The System is Broken: inadequacies and inequities in insurance coverage and financial support for endometriosis including in those who use medical cannabis This theme was pronounced and consistent with literature showing there are evidentiary obstacles, disparities and common misconceptions about the endometriosis disease, diagnosis, and treatment in health and insurance settings.[ 13 , 54 – 56 ] Consumers, advisers and insurance sector participants mostly felt that endometriosis should be covered under more trauma insurance contracts. For our respondents, significant out-of-pocket medical expenses remain a huge challenge for those with endometriosis due to inadequate public health funding for the condition (e.g., timely diagnostic and surgical services) and private health insurance coverage gaps. Medical cannabis and certain other medications were often reported as not covered, highlighting gaps in the public and private health insurance reimbursement systems for endometriosis related medications now being more widely used in the community. Lack of awareness of contract terms and cover under income protection was a big issue for a particular claimant: "I found out through my employment that I had been paying for income protection insurance for about four years that I didn’t even know I had. Because of the endo, I had to take a lot of time off work...I went down to a casual part-time salary, and now my income protection was only giving me a couple of hundred bucks to live on. It’s not enough. I don’t know who to talk to...I can’t live, and I can’t work." [Banana, 25–30] Banana gave quite vivid insights into her rollercoaster experience of successfully claiming on income protection insurance for endometriosis. She had been paying for cover at a higher sum insured while working more, then dropped her hours of work due to endometriosis, later stopped and claimed due to her endometriosis only to find her payout reduced as her insured income had reduced pre-claim. She described it as a traumatic experience, requiring her to move back home to New Zealand from Australia to be with family due to the substantial disease costs, she could no longer financially cope. The substantial cost of the illness was universally mentioned by all consumer respondents. Further, all stated that there was a significant gap between their health insurance and their out of pocket expenses as Anna expresses: “I've found private health insurance to be pretty much mandatory, because otherwise the costs are just exorbitant…even with private health insurance, it's a costly venture." [Anna, 25–30] Our respondents overwhelmingly felt private health insurance was ‘essential’. Most found extras cover ‘critical’ for managing the condition and its private costs, using it for acupuncture, pelvic physiotherapy, chiropractic and other care. Extending health insurance to cover gym memberships to promote low to moderate intensity exercise was sought after. The impact of patchy reimbursement coverage of medical cannabis costs under private health insurance was vocalised by Anna in this quote: "A lot of gynaecological things aren’t actually covered as much as you would think they would be. I have to be on a really expensive pill, and that’s not covered. It’s not under PBS, and they’ve recently changed the pharmaceutical rebates with private health insurance, so I’m not getting anything back for that anymore. In terms of the cannabis, that’s not covered at this point in time." [Anna, 25–30] Some unique insights were provided by one industry participant who also was also an endometriosis patient that consumed cannabinoids. They were able to provide a unique perspective as they were an insured medical cannabis consuming endometriosis consumer, and held insider expertise in the insurance area as they could also see the workings from the “other side” (i.e., from inside insurers). They noted that they felt there were some clear gender discrepancies – mostly due to the amount of coverage that is required for time off work: “my husband had prostate cancer this year and he had his prostate removed. He was able to go back to work 3 or 4 weeks later, and then Bob's your uncle: We got a trauma payout, so why shouldn't a woman? That’s where we are at this point. So why shouldn't a woman who has to say, undergo full hysterectomy due to endometriosis, receive a trauma payout and in full. Because that's longer time off work. That is 6 to 8 weeks!” [Business Development Professional] They also noted the costly nature of cannabis as a medicine, despite holding insurance. “I well, I get massage, and that helps. And I thought about getting physio for I've been told that that can be helpful. So that's something I'm looking into. So that's also important. And then, yeah, medicinal cannabis is something I use to manage my symptoms. And it's not cheap like it's but it is really effective. So I do CBD oil and like THC oil as well... If that were covered. That would be incredible, like, I don't. It's just 100. It's like a lot of money. It's hundreds of dollars for that. [Business Development Professional] When public health does not provide adequate support for endometriosis surgery, people can take out private health insurance to supplement their health care needs if they can afford it. Whilst most participants agreed it was critical, a notable outlier opinion on this vexed issue of public vs private financial support of endometriosis was best expressed in the following quote: "I don’t agree with private health insurance. I think it should all be public. But it isn’t, and I’m lucky enough to have an income that allows me to have it. So I take it out, although I don’t think anyone should have to. When I went through the surgery for my endometriosis, I did end up using my private health for the hospital phase and some of the surgery phase, but not everything was covered. Only some of it." [Usava, 40–45] Only three of the nine retail providers of trauma insurance in Australia cover endometriosis as a defined specific lump sum illness payout condition. Whilst some industry stakeholders expressed it may be a difficult one to insure, in response to considering if endometriosis should be covered in more trauma contracts, the responses point to the inequities inherent in the products on the market: “I think it's quite discriminatory that we don't have that in there. That all insurers don't offer some sort of level of cover. It is quite difficult to obtain a claim.” [Chief Medical Officer – Psychology and Mental Health] Current Australian law allows early access to superannuation retirement savings on narrow compassionate grounds to fund things like medical treatments for members or a dependant.[ 30 , 42 ] To be eligible, medical treatment must be required to treat either a life-threatening illness or injury, alleviate acute or chronic pain, or chronic mental illness. The medical treatment must also be not readily available through the public health system. Due to very long wait times on public hospital lists, women with endometriosis have been known to cash in their superannuation to pay for endometriosis surgery by a private surgeon.[ 57 ] Most respondents across consumer and industry cohorts weren’t shocked at this, reinforcing that endometriosis remains in the “too-hard basket” across society: “I wouldn't be surprised at all. I reckon there's a lot of chronic conditions that don't fall into one of our neat little boxes to get paid a benefit where people have to do that sort of thing, you know." [Chief Underwriting & Claims Officer] Previous research has shown insurance consumers with endometriosis are reluctant to discuss cannabis use with treating physicians and disclose use to life insurers when asked.[ 12 ] This type of personal history is important to insurers when assessing risk. Smoked tobacco is known to pose much higher insurance medicine risk for mortality and morbidity in humans compared to smoked or vaporised cannabis,[ 58 – 61 ] however some of the responses suggested insurers were not distinguishing this risk accurately. Adviser respondents reported being able to still obtain cover for clients provided CBMPs were prescribed by a doctor, albeit some falsely were labelled as ‘smokers’ even though they did not smoke tobacco nor did they smoke their prescribed cannabis. This meant they were charged higher premiums than they should have been even though they consumed their CBMPs via safer methods of administration (e.g., oils). The under-disclosure of cannabis use theme was best recognised by insurers in this quote when the respondent put herself in a consumer’s shoes: “how much should I tell? I think it's more prevalent than what we're what's actually being recorded.” [Technical Underwriting Manager] The implications here are that there is some recognition inside insurers that under-disclosure of cannabis use occurs amongst their client base. Strategies and questioning techniques that prompt disclosure should be encouraged to reduce stigma (particularly where the medication being taken is efficacious, improves work capacity and thus improves insurability). The Financial and Emotional Toll of Endometriosis The gendered, hidden cost of endometriosis Women with surgically confirmed endometriosis often reduce their working hours or even transition out the labour force following diagnosis, so supportive workplace practices, superannuation and insurance coverage / reimbursement settings to assist with managing disease costs may help women remain in or return to work.[ 3 , 15 , 62 , 63 ] Limited understanding of product fine print is critical in these situations, described by Alice: "It can be a complex subject matter...there is a lot of information to absorb when you’re first being admitted to a super fund or a contract of life insurance." [Alice, 35–40] Moving in and out of a job or work in Australia can trigger alterations or cancellations of previously automatically accepted, inforce life, tpd and income protection covers via superannuation and workplace group salary continuance policies. Communication on limitations in coverage when starting a new job, alterations of hours and potential cessation or continuation of cover product rules on exit of employment are key areas of vulnerability in those with endometriosis, employers and the life insurance industry, as best stated by Ruby: "I had to have a stand-down period of three years due to anxiety, which is kind of a fun side effect of endometriosis." [Ruby, 30–33] Workforce, health and insurance systems were not designed around the needs of women, so broad collaboration of government, professional bodies, educational and insurer industry organisations is needed to mount a sustained challenge to pervasive gender bias in health and care related industries.[ 64 ] This inequity was expressed by Matilda: “we don't ask to have these conditions, but we end up paying for it in more ways. Then people don't really understand that with it not being a visible illness.” [Matilda, 25–30] Gender bias can create systemic complexity and ambiguity surrounding the question of discrimination in insurance that can cause financial challenges for patients as they are either not covered or paying more.[ 65 ] The significant cost burden of endometriosis necessitates greater reimbursement from public health bodies and private insurance organisations to improve community outcomes. The lack of knowledge and training is expressed in the following quote: “it’s the awareness. I think that's more what it is rather than in depth training on the condition. It's more awareness of what the hell it is, where it fits, into what systems it affects and what parts of any of your contracts is going to be an issue for. So that sort of training, I think, it is almost completely ignored.” [Chief Underwriting & Claims Officer] Discussion Our findings show that people with endometriosis are being disadvantaged significantly. They are under insured, they are unfairly paying more for coverage and they have fewer choices available to them as only a small percentage of the insurance industry caters to those with endometriosis via for example, trauma contracts. Insurance companies often argue that few women (~ 1%) are affected by endometriosis but the prevalence in clinical data studies (6.8%), population-based surveys/self-reported studies (6.6%), and symptomatic patient data (21%) reveals a very different picture.[ 49 ] Existing research has found that there is lack of formal education and training in clinical medicine for health practitioners on endometriosis diagnosis and management [ 66 , 67 ] and the endocannabinoid system [ 68 – 72 ] and these gaps clearly exist from the feedback provided in the insurance medicine settings of this study. About one in ten or about 100,000 women with endometriosis use cannabis for symptomatic management of the condition.[ 39 , 73 ] Medicines in Australia are clinically relevant if they are generally accepted in the medical profession as necessary for the appropriate treatment of the patient. However, CBMP prescribing is not recommended as a first or even third line treatment in any clinical guidelines for any condition in Australia. Notwithstanding this, over 5,500 General Practitioners and Specialists in Australia prescribe cannabinoids, including many for endometriosis.[ 74 ] Therefore, updated clinical guidelines factoring in real world evidence within an evidence-based medicine framework are desperately needed as they have not been updated by public health authorities or medical colleges in Australia since 2017. This will then help evidence translation into insurance medicine decision making and hopefully improve coverage for women with endometriosis. Conclusions Endometriosis consumers had limited understanding of life risk insurances, however when coverage was obtained via financial advice on insurances with an adviser they felt more informed. Automatically obtained cover via a superannuation fund or employment or when taking out a mortgage with a bank were found to be critical juncture points for decision making on insurance. Both industry and consumers felt endometriosis as a condition being covered as a lump sum payment under more trauma insurance contracts across the sector would be a good thing given the high private costs associated with disease management. Consumers are not currently being supported adequately by Medicare or private health insurances and are resorting to premature withdrawals from superannuation retirement savings to fund endometriosis care. Industry and consumer experiences around disclosure of endometriosis (and cannabis use) with insurance companies in establishing or claiming covers varies, confirming previous findings. Asking more specific targeted questions around methods of administration so consumers aren’t incorrectly labelled or charged higher premiums as ‘smokers’ is essential at underwriting application stage. The changing perception of cannabis use in the symptomatic management of endometriosis in society means public insurers, private health and life insurers play a critical role in helping to manage its cost and rebalancing ‘who pays the bills’ associated with this disease. This study has implications for the financial health and well-being of the endometriosis population and the broader community. Endometriosis coverage and awareness in more trauma contracts would go some way to improving financial recovery from surgical interventions and reducing the broader financial burden of the disease on women with endometriosis. Raising pharmaceutical extras claim limits for cannabinoids in private health insurance contracts is considered essential so that more women can dose appropriately to gain benefit from CBMPs and improve their capability to work and function in life. Such changes may also decrease the stigma felt by those with the condition who use cannabis and enhance their comfort in having conversations about it with doctors and insurers. It was clear in this study that consumers felt that they were not being adequately financially supported and insurance stakeholders felt they were not being provided with adequate training or adequate products to support women consumers. There is an urgent need to address the limited insurance support for women with endometriosis, including those who use cannabis. Abbreviations CBMPs Cannabinoid Based Medicinal Products ECS EndoCannabinoid System TPD Total and Permanent Disability Declarations The study was approved by the Western Sydney University Human Research Ethics Committee (approval number H15099). Each participant provided informed consent to participate under the human research ethics approved protocol. This study was carried out according to the requirements of the Declaration of Helsinki. Clinical trial number: not applicable. Competing Interests AP, JS and MA: as a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This study was not specifically supported by donor or sponsor funding. JS is employed as the chief scientific officer for Australian Natural Therapeutics Group. JS also sits on the board of the Australian Medicinal Cannabis Association and the scientific advisory board for United in Compassion, all in a pro bono capacity. MA has previously been an advisory board member for Evolv Therapeutics, is currently an advisory board member for Nectar Brands, both of which sell medicinal cannabis products. He has previously received funding from Canopy Growth, OzMediCann Group and Cannim to run clinical studies on medicinal cannabis for women’s health conditions, outside the submitted work. AP has business dealings with life insurers on behalf of clients in a professional capacity as a practicing financial planner and lawyer. SD declares no competing interests. Author Contribution AP wrote the majority of the manuscript, performed thematic coding and prepared all tables and Figure 1. SD and MA provided extensive editorial review and input into refinement of table coding and the final manuscript. 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J Psychosom Obstet Gynecol. 2021;42(3):174–80. Committee TSCAR. Current barriers to patient access to medicinal cannabis in Australia. In. Edited by Committee CAR. Senate Printing Unit, Parliament House, Canberra: Commonwealth of Australia; 2020. Dobson O, Barber M, Graham M, Carter A, Savic M. The wild west of medicine’: A qualitative investigation of the factors influencing Australian health-care practitioners' delivery of medicinal cannabis. Drug Alcohol Rev. 2024;43(5):1280–93. McIntosh N, Wilson Nathan J, Povalej P, Hunt L, Lewis P. An Exploration of Registered Nurses' Experiences Caring for Patients Taking Medicinal Cannabis. Nurs Open. 2024;11(10):e70063. Graham M, Chiu V, Stjepanović D, Hall W. A provisional evaluation of Australia's medical cannabis program. Int J Drug Policy. 2023;122:104210. Graham M, Renaud E, Lucas CJ, Schneider J, Martin JH. Medicinal Cannabis Guidance and Resources for Health Professionals to Inform Clinical Decision Making. Clin Ther. 2023;45(6):527–34. Armour M, Sinclair J. Cannabis for endometriosis-related pain and symptoms: It's high time that we see this as a legitimate treatment. Aust N Z J Obstet Gynaecol. 2023;63(1):118–20. Institute P. Cannabis in Australia 2024. In. Report: Penington Institute; 2024. Additional Declarations Competing interest reported. AP, JS and MA: as a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This study was not specifically supported by donor or sponsor funding. JS is employed as the chief scientific officer for Australian Natural Therapeutics Group. JS also sits on the board of the Australian Medicinal Cannabis Association and the scientific advisory board for United in Compassion, all in a pro bono capacity. MA has previously been an advisory board member for Evolv Therapeutics, is currently an advisory board member for Nectar Brands, both of which sell medicinal cannabis products. He has previously received funding from Canopy Growth, OzMediCann Group and Cannim to run clinical studies on medicinal cannabis for women’s health conditions, outside the submitted work. AP has business dealings with life insurers on behalf of clients in a professional capacity as a practicing financial planner and lawyer. SD declares no competing interests. Supplementary Files FGGroup1Questions.pdf FGGroup2Questions.pdf Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-6083910","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":504286951,"identity":"d3ff4884-940c-462b-b9fb-947a3a076ede","order_by":0,"name":"Andrew Proudfoot","email":"data:image/png;base64,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","orcid":"","institution":"NICM Health Research Institute, Western Sydney University","correspondingAuthor":true,"prefix":"","firstName":"Andrew","middleName":"","lastName":"Proudfoot","suffix":""},{"id":504286952,"identity":"127b92e2-def9-4258-947b-cc7214d321a4","order_by":1,"name":"Sarah Duffy","email":"","orcid":"","institution":"Western Sydney University","correspondingAuthor":false,"prefix":"","firstName":"Sarah","middleName":"","lastName":"Duffy","suffix":""},{"id":504286953,"identity":"b02d5a16-d7fc-47f1-a1bb-c0bb64e01fc6","order_by":2,"name":"Justin Sinclair","email":"","orcid":"","institution":"NICM Health Research Institute, Western Sydney University","correspondingAuthor":false,"prefix":"","firstName":"Justin","middleName":"","lastName":"Sinclair","suffix":""},{"id":504286954,"identity":"3184e11d-bdd8-434f-9b3d-ed42d6855699","order_by":3,"name":"Mike Armour","email":"","orcid":"","institution":"NICM Health Research Institute, Western Sydney University","correspondingAuthor":false,"prefix":"","firstName":"Mike","middleName":"","lastName":"Armour","suffix":""}],"badges":[],"createdAt":"2025-02-22 07:38:07","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-6083910/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-6083910/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":89975748,"identity":"31182a1d-a073-4ae1-84e5-4e3a8065bd6e","added_by":"auto","created_at":"2025-08-27 05:59:11","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":378206,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cem\u003e\u003cstrong\u003eCondensed Thematic Mapping of Consumer \u0026amp; Industry Experiences with Endometriosis, Insurance and Cannabinoids.\u003c/strong\u003e\u003c/em\u003e\u003c/p\u003e","description":"","filename":"Picture1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-6083910/v1/87755d0745c54228976d396e.jpg"},{"id":91610037,"identity":"4aa835cb-e805-4dd3-8ac9-f2f0aabeb55f","added_by":"auto","created_at":"2025-09-18 09:47:44","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":2013246,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6083910/v1/c10c34b7-97ab-4b05-a17d-72782d68fc2a.pdf"},{"id":89976833,"identity":"95ac001f-b70e-46c0-8190-2ee05d23dd05","added_by":"auto","created_at":"2025-08-27 06:07:11","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":169787,"visible":true,"origin":"","legend":"","description":"","filename":"FGGroup1Questions.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6083910/v1/c0c0fae7b6904f96e4d61350.pdf"},{"id":89975751,"identity":"c8617bb1-bf1a-4e3b-9af4-16b176e441d3","added_by":"auto","created_at":"2025-08-27 05:59:11","extension":"pdf","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":139477,"visible":true,"origin":"","legend":"","description":"","filename":"FGGroup2Questions.pdf","url":"https://assets-eu.researchsquare.com/files/rs-6083910/v1/3614e466d160f8691fee56f3.pdf"}],"financialInterests":"Competing interest reported. AP, JS and MA: as a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This study was not specifically supported by donor or sponsor funding. JS is employed as the chief scientific officer for Australian Natural Therapeutics Group. JS also sits on the board of the Australian Medicinal Cannabis Association and the scientific advisory board for United in Compassion, all in a pro bono capacity. MA has previously been an advisory board member for Evolv Therapeutics, is currently an advisory board member for Nectar Brands, both of which sell medicinal cannabis products. He has previously received funding from Canopy Growth, OzMediCann Group and Cannim to run clinical studies on medicinal cannabis for women’s health conditions, outside the submitted work. AP has business dealings with life insurers on behalf of clients in a professional capacity as a practicing financial planner and lawyer. SD declares no competing interests.","formattedTitle":"\u003cp\u003eInsurance, Endometriosis and the use of medicinal cannabis in Australia: A qualitative analysis\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eEndometriosis is a chronic inflammatory disease of unknown cause where endometrium-like tissue proliferates into other parts of the body, with detrimental effects on women\u0026rsquo;s functional status and physical, mental, social, and sexual well-being that can be disabling.[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] The disease is primarily found on the pelvic peritoneum, ovaries, bladder, and bowel as well as in the recto-vaginal septum, inducing a chronic inflammatory reaction which may result in scar tissue.[\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e] While accurate prevalence is difficult to determine, best estimates show that 11% [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]-14% [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e] of women in Australia have endometriosis by the ages of 44\u0026ndash;49, with most diagnosed during their early thirties. It is recognised as a significant public health issue requiring increased clinical awareness, research and management. [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e] Endometriosis is responsible for at least 40,500 annual hospitalisations[\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e] and the economic cost of endometriosis is at least \u003cspan\u003e$\u003c/span\u003e30,900 per person per annum [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. The disease has no cure and there are limited effective treatment options beyond surgery. [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e] Even then, up to 28% of patients may require a repeated surgical procedure during the 10 years after complete excision of endometriosis.[\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eGood quality life risk insurance contracts provide a financial safety net so that in the event of disability or major illness, including from endometriosis, or death, a financial cash cushion is available for those insured and their spouses or dependents (when applicable). This money may be used to pay down or service debt, replace lost income from being unable to work, fund medications and surgery. Private health insurance policies similarly are critical for people with endometriosis as it can cover some of the costs of treatment in a private hospital and other 'extras' (such as physiotherapy and pharmaceuticals like cannabis which are not generally registered as therapeutic goods nor eligible for reimbursement under Australia\u0026rsquo;s Medicare Pharmaceutical Benefits Scheme).\u003c/p\u003e\u003cp\u003eThe diagnostic delay in Australia is around 6.4-[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e] to 8.2 years [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e]. While diagnostic delay is decreasing [\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e], it is very likely that many women with endometriosis do not know they have the disease despite having symptoms. However due to a lack of diagnosis they will be unable to disclose their endometriosis to insurers. This means that many women may be borrowing money (for example to buy a home), and thus they and the community are exposed to significant financial risk and costs from underinsurance. There is an added complexity around cannabis use and insurance as people with endometriosis struggle to talk about their use of cannabis with insurers and their doctors.[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] This is a problem as about 10% of people with endometriosis in Australia use cannabis to manage their condition, meaning around 70,000 to 98,000 women in Australia consume cannabis for their endometriosis symptoms [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] Cannabis use for endometriosis in this cohort has been associated with improved work capacity and symptomatic management of pain, sleep, mood and appetite, outcomes which collectively suggest improved insurability.[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] However, qualitative insurance experiences amongst this cohort are unexplored, though we do know quantitatively that private health insurance \u0026lsquo;extras\u0026rsquo; offer minimal reimbursement for private cannabis pharmaceutical script costs of cannabis.[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] Cannabis or cannabinoids are re-emerging as a class of drugs that support women with endometriosis, increasing their capacity to work and engage in everyday activities.[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e] Insurance related research work is important therefore, due to the high rates of underinsurance in this population, disease prevalence, varying severity of endometriosis symptoms, and the high number of co-morbidities that are often present. [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e] These issues also present complex medical underwriting assessment questions for life insurers, reinsurers, advisers and consumers. [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e]\u003c/p\u003e\n\u003ch3\u003eInsurance Medicine, The Endocannabinoid System and Cannabis\u003c/h3\u003e\n\u003cp\u003e\u003cem\u003eInsurance medicine\u003c/em\u003e, as a field, straddles preventive, clinical, and rehabilitative medicine, as well as public health to help decision makers perform health-related evidence informed determinations on diagnosis, prognosis and the effectiveness of interventions in the context of life and health insurance coverage.[\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e] It is distinguishable as a field from \u003cem\u003eclinical medicine\u003c/em\u003e which seeks to examine, diagnose and treat patients.[\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eThe \u003cem\u003eendocannabinoid system\u003c/em\u003e (ECS) is a key homeostatic regulator of physiological and neuromodulatory activity in humans, widely expressed in the female reproductive system, and modulation of the ECS (comprising the G-protein coupled cannabinoid 1 and 2 receptors, their endogenous lipid ligands (i.e., endocannabinoids), along with the enzymes involved in the synthesis or degradation of those endocannabinoids), has therapeutic potential in many conditions, including endometriosis.[\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e] ECS dysfunction in endometriosis is suggested to be characteristic of what is known as a \u0026lsquo;clinical endocannabinoid system deficiency\u0026rsquo; syndrome.[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan additionalcitationids=\"CR25 CR26\" citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e] In short, established mechanisms of ECS action suggest that for endometriosis, exogenous plant cannabinoids have a role in mimicking, increasing or suppressing the body\u0026rsquo;s own cannabinoids (or activity at associated receptors) where they are not otherwise in a state of homeostasis.\u003c/p\u003e\u003cp\u003ePeople with endometriosis in Australia predominantly use delta-9 tetrahydrocannabinol cannabis flower and oil products, and cannabidiol preparations, to manage their symptoms with their sleep, pelvic pain, back pain, period pain, anxiety or depression and nausea described as \u0026lsquo;much better\u0026rsquo;, and report the complete cessation or significant reduction in use of opioids, other drugs and treatments.[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] Improved sleep, ability to do the activities of daily living (including socialising and exercise), enhanced appetite / food consumption and capacity to work has been seen, however costs of legal access and lack of public and private insurance product coverage has seen under-dosing reported.[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eNovel interventions like cannabis that may decrease pain,[\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e] reduce incapacity and workplace presenteeism may also improve productivity and lead to better and more stable income, insurability and the propensity to maintain and renew insurance policies.[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e] Expanding the pool of insured lives improves gender equity by enhancing economic participation, financial literacy and the economic security of women in society (and those assigned female at birth, hereafter denoted as women).[\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e] With the exception of some limited research into the adverse discrimination experiences of life insurance applicants that have been the subject of genetic testing for certain hereditary diseases,[\u003cspan additionalcitationids=\"CR34 CR35 CR36 CR37\" citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e] no Australian or international qualitative literature exists on the specific experience of endometriosis populations undertaking applications for (or claims on) insurance products. Women can develop frustrating relationships with financial and healthcare systems: from complex and long diagnostic processes, lack of treatment effectiveness, poor financial support mechanisms and persistence of symptoms which all contribute to a variety of challenges, compounded by negative cognitive patterns including emotional distress, catastrophising and fear-avoidance behaviours, which can amplify their experiences.[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eDue to the under researched nature of endometriosis in insurance medicine, this research undertakes an exploratory qualitative analysis of experiences with life risk insurance and private health insurance in those with endometriosis using cannabis and industry representatives providing them services. No research to date has assessed the impacts of endometriosis and cannabis on life and private health insurance in those with the disease, nor on those who provide insurance services to them. Our contributions and aims with this research were guided by the following research questions and themes:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhat are endometriosis patients\u0026rsquo; understandings of life insurance and their views on other related covers like disability, trauma and income protection, and how did they obtain covers (e.g. automatically via a superannuation fund or employer, via a financial adviser or directly with an issuer)? And;\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhat are industry and consumer experiences around disclosure of endometriosis (and cannabis use) with insurance companies in establishing or claiming on covers? And;\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eWhat were industry and consumer thoughts on endometriosis as a condition being covered under more trauma insurance contracts across the sector?\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\u003cp\u003e In researching these questions, we wanted to understand how the endometriosis cohort are being treated relative to other populations with chronic diseases during pre-assessments, advice, applications, and claims and whether underwriting and claims management guidelines are accurate when it comes to this condition and contemporary knowledge of the use of Cannabinoid Based Medicinal Products (CBMPs).\u003c/p\u003e\u003cp\u003eFor private health insurance, views from the patient perspective were sought on the role it plays or does not play in their financial management of endometriosis (e.g., like coverage for hospitalisation costs, allied health and pharmaceuticals). Self-management strategies for endometriosis in Australia are common [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan additionalcitationids=\"CR40\" citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e], so we wanted to explore our respondents experience with, \u0026ldquo;extras cover\u0026rdquo; under private health insurance contracts such as for pharmaceutical reimbursement of non-approved CBMPs and other treatments such as pelvic pain physiotherapy. Similarly, given the high out of pocket costs of this disease, we also asked wanted to ask what our respondents from the insurance industry think about reports of endometriosis patients accessing their private superannuation retirement savings early to fund essential medical care like surgery treatments.[\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section3\"\u003e\u003ch2\u003eParticipants\u003c/h2\u003e\u003cdiv id=\"Sec5\" class=\"Section4\"\u003e\u003ch2\u003eInsurance Stakeholders\u003c/h2\u003e\u003cp\u003eSeven small interview groups or one on one interviews were held with nine industry leaders (4 men, 5 women). Each had significant, senior level experience in their roles within life insurance in Australia including a chief underwriter (retail and group life insurance products); a national technical underwriting manager (who also represented a key member-owned and run industry association committee for underwriting and insurance medicine professionals in Australia); a chief medical officer for mental health (claims and psychology); two business development managers; and four licensed, experienced life risk specialist financial advisers. Three people had lived experience with endometriosis themselves or had a close relative with the disease. All had thirteen years or more experience dealing with thousands of Australian insureds surrounding life insurance in financial advice, underwriting, medical consulting and claims management settings.\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e\n\u003ch3\u003eConsumers with endometriosis\u003c/h3\u003e\n\u003cp\u003eFour small interview group sessions with consumers were held with a total of ten participants who have endometriosis, to provide feedback on their experiences with insurances. All were diagnosed by surgery and seven of the participants consulted three or more doctors before receiving an endometriosis diagnosis. Participants were from urban and rural areas from Australia\u0026rsquo;s most populated States. Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e1\u003c/span\u003e shows the key demographics of the participating consumers.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eSurvey Demographic Data of Consumer Respondents\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eN\u0026thinsp;=\u0026thinsp;10\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eMedian (IQR)\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eMean (SD)\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCurrent age\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e35 (5.9)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eAnnual work-based income (\u003cspan\u003e$\u003c/span\u003eAUD)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cspan\u003e$\u003c/span\u003e145,000\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYears since diagnosis\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"char\" char=\".\" colname=\"c3\"\u003e\u003cp\u003e5 (7.7)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eStage of endometriosis at most recent laparoscopy\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStage 4 (severe)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (50)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStage 3 (moderate)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStage 2 (mild)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStage 1 (minimal)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (20)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUnsure/Don't know\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eHighest Education Level\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eDiploma\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eBachelor's Degree\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e8 (80)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eMaster's Degree\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eState of Residence in Australia\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eQueensland\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (40)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNew South Wales\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (40)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eVictoria\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (20)*\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eResides in Rural or Urban Area\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eRural\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (40)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eUrban\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e6 (60)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003ePreviously used cannabis medically prescribed or illicit for any reason?\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e9 (90)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e*One VIC participant moved to New Zealand after claiming on insurance and completing survey.\u003c/p\u003e\u003cp\u003eOther demographic points of relevance were that of the ten participants, two identified as non-binary (all others as women) and one was an indigenous Australian. When asked about their experience with insurances, all respondents advised as follows:\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e\u003ccolgroup cols=\"6\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e2\u003c/span\u003e - Consumer experience with endometriosis and insurances\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eEver had any of the following types of insurance? N (%)\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eLife\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eTPD\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c4\"\u003e\u003cp\u003eTrauma\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c5\"\u003e\u003cp\u003eIncome Protection\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c6\"\u003e\u003cp\u003ePrivate Health Insurance\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNever had it\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (30)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e2 (20)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e9 (90)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e3 (30)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e0 (0)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCurrently have it\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e5 (50)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e5 (50)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e6 (60)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e10 (100)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eHad it previously but not currently\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e2 (20)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003e3 (30)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u003cp\u003e0 (0)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u003cp\u003e1 (10)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u003cp\u003e0 (0)\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003eEver had any issues or difficulties when obtaining cover or altering your existing life risk insurance cover related to endometriosis?\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003en (%)\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eYes\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (30)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e4 (40)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eNo response\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e3 (30)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe first author who chaired all sessions with industry and consumers has 16 years of experience as a senior financial adviser specialising in life risk insurance advice, and claims for individuals and enterprises domiciled in Australia, and is also a practicing lawyer.\u003c/p\u003e\n\u003ch3\u003eProcedure\u003c/h3\u003e\n\u003cp\u003e The study was approved by the Western Sydney University Human Research Ethics Committee (approval number H15099) and the design protocol for research involving humans was in accordance with guidelines of the National Statement of Ethical Conduct in Human Research. It formed part of the second phase of a wider fixed and emergent mixed methods multiphase project.[\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e] In the first phase we undertook cross sectional surveys of patients and insurer experiences on endometriosis, cannabinoids and insurance and have published some of this work separately.[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e] A combination of snowballing and convenience sampling occurred via email invitations containing the survey link sent across various professional networks of the authors, and social media site posts including on Facebook, Instagram, LinkedIn and X (formerly Twitter).[\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eIn this second phase, we conducted qualitative interviews with the two distinct groups recruited from a sub-set of respondents from the initial online surveys: Endometriosis patients and insurance industry stakeholders.\u003c/p\u003e\u003cp\u003eConsumer participants were purposively selected on the basis of self-reported age (\u0026gt;\u0026thinsp;18y/o) and a medical diagnosis of endometriosis by a health practitioner. In small interview groups or one-on-one interview settings, topics explored included their lived experiences, opinions, concerns, and wishes with regard to life risk \u0026amp; private health insurance covers including how cannabis use impacted those experiences. The consumer sessions were researcher guided and informed by the prior survey research results. Steps were taken to provide anonymity throughout this process which was important due to the sensitive nature of the subject matters of discussion (including medical/financial information and the potential for disclosure of non-medically prescribed cannabis use and therefore criminal liability risks). The interviews took place via zoom with between one to eight people per group, with ten respondents in total. Specific issues were then explored to generate data on matters like disclosure, underwriting outcomes, issues of conjecture (e.g., CBMP use results in \u0026lsquo;smoker rates\u0026rsquo; or \u0026lsquo;non-smoker rates\u0026rsquo;), private health insurance reimbursement for the cost of their CBMPs and how patients fund surgery costs and experience claims.\u003c/p\u003e\u003cp\u003eNine life insurance industry stakeholders (financial advisers, underwriters, medical officers and business development professionals) participated in non-anonymous small group interviews or one on one sessions. These sessions covered financial advice, underwriting / claims standards and guidelines on endometriosis and CBMP use.\u003c/p\u003e\u003cp\u003eThe responses were discussed, compared, and then contrasted in more detail to understand if either endometriosis or cannabis use were actual or perceived barriers to the purchase and usage of various insurance products in this insurance population and to see if there were needs for product innovation, training, tools and resources to be developed for insureds, advisers and insurers. Supplementary File A1 provides the questions used as starting points across the groups.\u003c/p\u003e\u003cdiv id=\"Sec8\" class=\"Section2\"\u003e\u003ch2\u003eAnalysis\u003c/h2\u003e\u003cp\u003eResponses attribution with line-by-line coding followed by a thematic analysis using Braun and Clarke\u0026rsquo;s six-phase process for data engagement, coding and theme development was conducted.[\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e] This thematic analysis was not intended to be \u0026lsquo;rigid\u0026rsquo; as it was conducted within a pragmatic worldview paradigm.[\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e, \u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e] This positioning was important to align with the exploratory aim of understanding experiences to improve insurance medicine real-world evidence based underwriting and claims outcomes for endometriosis and CBMPs, and to make recommendations for how insurers could work better to improve coverage and support for people with the disease.\u003c/p\u003e\u003cp\u003eIn the first data analytic phase, primary author (AP) de-identified the transcripts and collated these into Word documents. AP (re)read these transcripts and noted key reflections, observations and reactions. AP met with all other authors to review the data. In the second phase, AP generated initial codes into one Excel document. Generated initial codes were in the left column of a table, while preliminary themes were built. For consumers, all quotes are presented with a pseudonym and the participant\u0026rsquo;s age. For all professionals, their job title was used.\u003c/p\u003e\u003cp\u003eThe overarching theme was that \u003cem\u003eendometriosis is an expensive, underreported, misunderstood, costly disease to manage with poor public and private insurance coverage\u003c/em\u003e. For the consumer cohort these themes across the different insurances and their underlying \u0026lsquo;thematic definitions\u0026rsquo; emerged as follows in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e1\u003c/span\u003e:\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes and Sub-Themes from Consumers\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSub-Themes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eNavigating Insurance Complexity\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition:\u0026nbsp;Struggles to understand and manage insurance)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI have \u003cb\u003elimited understanding\u003c/b\u003e of life and disability insurance policies.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI am \u003cb\u003eunaware\u003c/b\u003e of terms, exclusions, and how to access support\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI have \u003cb\u003eexclusions for endometriosis\u003c/b\u003e, mental health, and other chronic conditions\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI am frustrated with being \u003cb\u003edenied\u003c/b\u003e temporary disability \u003cb\u003einsurance due to prior diagnoses and the providers\u0026rsquo; lack of understanding\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI have \u003cb\u003edifficulties\u003c/b\u003e in contacting insurers and navigating claims processes.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI have \u003cb\u003eexperienced lengthy delays\u003c/b\u003e in approvals and disputes\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e2\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eFinancial Vulnerability\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: High financial burden from medical costs)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI experience \u003cb\u003ehigh out-of-pocket costs\u003c/b\u003e for surgeries, allied health, and treatments\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI get \u003cb\u003elimited rebates for essential therapies like medicinal cannabis\u003c/b\u003e.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI think \u003cb\u003eextras cover is valuable for therapies\u003c/b\u003e such as acupuncture, physiotherapy, and psychology\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e3\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eBarriers in Claims and Coverage\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Difficulties with claims and pre-existing condition exclusions)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI have had \u003cb\u003epositive experiences with insurer programs that offer discounts and rewards\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI feel \u003cb\u003ediscomfort in disclosing sensitive conditions\u003c/b\u003e like endometriosis and treatments like cannabis.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI feel \u003cb\u003eemployer-provided insurance is important in easing costs\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI think hospital cover \u003cb\u003ereduces some costs\u003c/b\u003e but I still incur significant expenses.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e4\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eValue and Limitations of Private Health Insurance\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Private health insurance plays a critical role in accessing faster treatment and allied health, but hospital cover was often inadequate)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI feel \u003cb\u003efrustration with insurance\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI \u003cb\u003erely on therapies\u003c/b\u003e like osteopathy, acupuncture, and physiotherapy for pain management\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e5\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eHolding Coverage for Complementary Therapies is Essential\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Private insurance supports care but has limitations)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eI \u003cb\u003eregularly use these therapies\u003c/b\u003e to maintain quality of life \u003cb\u003edespite high costs\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eFor the industry cohort, a different picture of themes emerged reflecting their experiences with endometriosis and insurance as shown in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e\u003cp\u003e\u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e\u003ccaption language=\"En\"\u003e\u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e\u003cdiv class=\"CaptionContent\"\u003e\u003cp\u003eThemes and Sub-Themes from Industry Stakeholders\u003c/p\u003e\u003c/div\u003e\u003c/caption\u003e\u003ccolgroup cols=\"3\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eTheme\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eSub-Themes\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003e1\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eSystemic Gaps in Insurance Policies\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Life risk insurance policies fail to adequately address the coverage needs of endometriosis sufferers, particularly trauma insurance)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients won't get a claim under Total and Permanent Disability (TPD) or trauma. Clients are just left to handle it on their own.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients obtaining cover without exclusions is near impossible.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eEven with trauma benefits, the payouts for clients are inconsistent and exclusion-heavy.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eFor clients and insurers, severity-based payouts undervalue the chronic nature of endometriosis.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e2\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eGender and Social Dynamics\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Gendered assumptions and stigma worsen the experiences of women with endometriosis)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients feel dismissed as \u0026lsquo;it\u0026rsquo;s just period pain\u0026hellip;\u0026rsquo; People generally - and insurers - don\u0026rsquo;t understand how life-altering it is.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients may avoid disclosing it at work and to insurers and to doctors because of judgment and stigma.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClient\u0026rsquo;s feel caught between proving they\u0026rsquo;re well and not wanting to be seen as weak.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers and community perceive endometriosis as a private issue rather than a legitimate health condition.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers and community dismiss it as period pain... It is far more impactful on women\u0026rsquo;s lives than that.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e3\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003ePersonal Cost of Endometriosis as a Chronic Illness\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: The disease creates profound physical, emotional, and financial burdens)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients absorb the cost of the surgeries, the cost of IVF, and the time off work. This can be devastating.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients managing this condition can feel like it is a second job\u0026mdash;without any benefits and only costs.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients spend tens of thousands on treatments that aren\u0026rsquo;t covered.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients living with this condition find it exhausting; they never fully recover.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e4\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eChallenges in Underwriting and Claims\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Underwriting processes struggle to accommodate the variability of endometriosis)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClient ultrasound findings can be identical for two women, but their symptoms are worlds apart.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers just don\u0026rsquo;t have the data to fairly assess these disclosures and claims. Severity varies between clients, making it hard to assess.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers lack tailored guidelines on \u003cem\u003emedical use of cannabis\u003c/em\u003e that make it impossible to assess risks accurately.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eClients often give up after their applications are delayed or denied.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers look to clinical medical fraternity who don\u0026rsquo;t connect symptoms to endometriosis for years.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003e\u003cb\u003e5\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e\u003cb\u003eOpportunities to innovate and provide better coverage for endometriosis\u003c/b\u003e\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003e(Thematic Definition: Innovation is needed to ensure insurance policies adequately cover endometriosis)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eTrauma payouts should consider hysterectomies or chronic disability caused by endometriosis.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInsurers need to modernise their products to match current medical knowledge.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003ePartial [trauma] benefits are a start, but they\u0026rsquo;re not enough for severe cases.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eWe need products and models that prioritise patient outcomes over profit margins.\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/colgroup\u003e\u003c/table\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eAP then met with authors (SD and MA), and AP and SD further refined the initial codes and corresponding data across the two cohorts based on conceptual similarity and located latent themes to develop three condensed big picture themes from Tables\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e1\u003c/span\u003e and \u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e2\u003c/span\u003e into those outlined in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e below. ChatGPT4o was used by the first author \u003cem\u003eto validate our editing and theme identification\u003c/em\u003e in Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e with the output broadly consistent with our thematic mapping findings, though it lacked nuance.\u003c/p\u003e\u003cp\u003e\u003c/p\u003e\u003c/div\u003e\n\u003ch3\u003eData Trustworthiness\u003c/h3\u003e\n\u003cp\u003e The framework of Lincoln and Guba was followed to establish trustworthiness in our data.[\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e] As insider researchers, we have engagements with the groups of interest across insurance, consumers (patient support groups) and industry providing us with a deep understanding of the context adding credibility to the work. The findings may have global transferability for women in other jurisdictions, but they will likely most resonate in women with endometriosis in places where private and public health funding for management of the condition is poor. We expect that insurer experiences, given the dearth of evidenced based insurance medicine guidance on CBMPs, will be consistent given the way global reinsurance guidelines are developed and disseminated, but details of underwriting responses will change in different international jurisdictions due to differing legal status and approaches to cannabis as medicine. The emotional experiences of patients around insurance coverage for endometriosis and its treatment are likely to be consistent (which is that it is generally lacking and it causes personal financial distress) given its prevalence in 180\u0026nbsp;million people globally.[\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e] The senior last author MA reviewed the process of AP and SD and conclusions to ensure the development of robust results and we confirmed of our findings together by reflecting on the research process in fortnightly group discussions, discussing how it was unfolding and how our personal subjectivities shaped our interpretations.[\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e]\u003c/p\u003e\n\u003ch3\u003ePositioning the Self: Subjectivities and Insider-Outsider Status\u003c/h3\u003e\n\u003cp\u003e The primary author\u0026rsquo;s subjectivities played a significant role in the conception, design, analysis, and structure of the insurance aspects of this research which were then shaped by the whole team\u0026rsquo;s collective research values, ethics, expertise and experiences across the gendered dynamics of business, women\u0026rsquo;s health and pharmacognosy research. Aspects of the industry data reflected validation of the primary author\u0026rsquo;s \u0026lsquo;insider\u0026rsquo; status as an adviser that highlighted common difficult experiences obtaining cover for women with the disease and perceived lack of training and evidence informed decision making around CBMP use in insurance settings. The other authors had outsider positioning as \"pharmacognosy researcher\" and \"academic\" and \u0026ldquo;subject matter\u0026rdquo; experts on the non-insurance related issues, enabling more nuanced, inquisitive perspectives to support the primary author such that the collective deep expertise lay across related fields of the institutional context of gender equity, women\u0026rsquo;s reproductive health and cannabis as medicine domains.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThe three key condensed themes (from Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e above) that emerged from the data analysis were:\u003c/p\u003e\u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003e\u0026lsquo;Insurance barriers and systemic gaps\u0026rsquo;,\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003e\u0026lsquo;Gendered assumptions and social stigma in insurance and healthcare\u0026rsquo; and\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003e\u0026lsquo;The Financial and Emotional Toll of endometriosis.\u0026rsquo;\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e\u003cp\u003eTogether these three themes reflect that the medical and insurance systems in Australia are not providing adequate financial support to people with endometriosis with significant consequences for the community. The key experiences and issues surrounded the following:\u003c/p\u003e\u003cp\u003e\u003cul\u003e\u003cli\u003e\u003cp\u003epolicy exclusions for endometriosis and its co-morbidities, claim difficulties, challenges assessing severity, and lack of product innovation / coverage.\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003ea perception of endometriosis as minor (\u0026lsquo;just a period\u0026rsquo;), people are reluctant to disclose (endometriosis and cannabis use) when applying for cover and\u003c/p\u003e\u003c/li\u003e\u003cli\u003e\u003cp\u003ea general lack of \u0026lsquo;insurance medicine recognition\u0026rsquo; of the disease.\u003c/p\u003e\u003c/li\u003e\u003c/ul\u003e\u003c/p\u003e\u003cp\u003eThese contribute to high out-of-pocket costs, financial concerns, and have long-term health and prosperity impacts.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eInsurance Barriers and Gaps\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e\u003ch2\u003eSystemic complexity, gaps in access and cover under insurance policies\u003c/h2\u003e\u003cp\u003eThis underlying theme reflects the intersection of how inadequacies in \u003cem\u003eclinical medicine\u003c/em\u003e management, from diagnosis to treating endometriosis (e.g., delays in diagnosis and surgery), \u0026lsquo;spills over\u0026rsquo; into \u003cem\u003einsurance medicine\u003c/em\u003e information asymmetries as between consumers and insurers, causing gaps in coverage for the disease. Uncertainties around access to financial advice, the disease itself, symptom management, and approach to the use of novel treatments in policy application and claim settings was evident across consumers and industry. Systemic barriers in diagnostics and treatments prevent fair and adequate coverage for endometriosis (including warranted or non-warranted imposition of loadings, exclusions, misalignment with the needs of consumers, and insurer reluctance to modernise offerings). The implications of this are consumers are disadvantaged, and the industry have gaps in their knowledge, products and internal processes.\u003c/p\u003e\u003cp\u003eFor our consumer participants, these uncertainties and inadequacies in endometriosis management meant that they found it difficult to understand and secure affordable underwritten life insurance coverages on fair terms, especially with co-present pre-existing conditions (a common experience among women with endometriosis). Ruby, age 30\u0026ndash;35, highlighted the lack of targeted questioning and tailored information from insurers, saying, \u0026ldquo;It was hard to figure out where endometriosis fits\u0026mdash;chronic pain or gynecological problems?\u0026rdquo; This also speaks to the lack of specific and detailed knowledge by insurers about endometriosis.\u003c/p\u003e\u003cp\u003eGeneral gaps in understanding of insurance coverage emerged (such as product exclusions and loadings), particularly related to superannuation-based life insurance covers and chronic conditions. Alice, age 35\u0026ndash;40, noted, \u0026ldquo;I didn\u0026rsquo;t even know what I had until I needed it.\u0026rdquo; Most consumers obtained access to life, tpd and income protection insurance via their superannuation fund:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I obtained mine through my government super. So I was working Federal for a while...I increased it before I left that job, which I think in hindsight was probably a pretty good move. I did not go shopping around; just took the win on the government.\" [Kat, 35\u0026ndash;40]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThis highlighted the critical importance of automatic acceptance for death and tpd insurance cover that is given to consumers via superannuation upon joining an employer default fund at the commencement of employment. However, many of our respondents were unaware of its existence in their member accounts, its breadth or its cost.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I rang the super company just to talk about my actual super, and then I found out that I was already paying for life insurance, etc. So I kind of talked to them about that and just did the levels. It wasn\u0026rsquo;t without advice. It was just through that [super company].\u0026rdquo; [Alice, 35\u0026ndash;40]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSome also were prompted to access insurance when obtaining a mortgage or via advice from a financial adviser. There are about 16,000 registered financial advisers in Australia but of these, only 7% focus primarily on writing life risk insurance, 15% write some life risk insurance, and 78% write little to none which makes it a challenge for the community to access financial advice on insurance. This highlights the relevance of other insurance distribution channels like banks when consumers take out a mortgage for a property purchase:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"Life insurance was a requirement for my bank when we went into the mortgage process. They didn\u0026rsquo;t really give us an opportunity to shop around...so we just had to go out and get it through them. There were exclusions because I had anxiety, about what I could get. I haven\u0026rsquo;t looked into it since. I think there are probably better options out there now that I could shop around for.\"[Ruby, 30\u0026ndash;33]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eMany consumers don't really know what they should be doing or asking for, either due to a lack of knowledge or being forced to rely on certain providers. When medically underwritten in taking out cover, some participants (but not all) faced coverage denial or exclusions related to endometriosis (e.g., including for co-morbidities like anxiety). The role of advisors, banks and superannuation funds in simplifying insurance decision-making, knowledge communication and assisting clients in cover pre-assessments, price/product comparisons was recognised.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I haven't set up life insurance just yet. Looking into it with my partner to see what suits our family best. However, I also do have like an income protection insurance setup through my original home mortgage from when I first bought my first property.\u0026rdquo; [Anna, 30\u0026ndash;35]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe accounts above speak to the highly varied consumer experience and disparities in insurance literacy. Matilda\u0026rsquo;s experience here shows that her choices were limited due to endometriosis coupled with adverse mental health history as pre-existing conditions, but an adviser helped her:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"We got life insurance as part of a bundle deal through an advisor. The advisor did a lot of the research for us. We did our own research to compare what the advisor was saying, and we were quite happy with that advice. There were only two companies we could really consider with both my endometriosis and extensive medical history. I've got a whole heap of exclusions around mental health and suicide and all of that kind of thing which makes it quite difficult\u0026hellip; but nothing explicitly endometriosis for life insurance other than disability \" [Matilda, 25\u0026ndash;30]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eUsava, reinforced the typical medical underwriting experience that highlights the difference between how disability covers like tpd and income protection are assessed by life insurers (compared to life and trauma benefits) when endometriosis is disclosed at application stage. It reflects an information imbalance or asymmetry (the insurance companies know what all these things are and how they make decisions whereas consumers don't really understand complex health interactions with financial products, decision making and the \u0026ldquo;system\u0026rdquo;):\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I am not sure how it works. For disability, my endometriosis is an exclusion, but for everything else they haven\u0026rsquo;t worried too much about it.\" [Usava, 40\u0026ndash;45]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eFor the industry, gaps in training, expertise and evidence-based insurance medicine knowledge about endometriosis, the endocannabinoid system and cannabinoids as medicines was evident. The following quotes speak to the complexity of assessing endometriosis and associated conditions as well as the complex nature of treatment options:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"It\u0026rsquo;s trying to identify. If that kind of sits within a continuation of the same condition, or does it actually, there may end up medical plus and mental disorder? And so therefore if it's two separate conditions looked at from the matrix, the guidelines, and underwriting from a claims perspective.\" [Chief Underwriting \u0026amp; Claims Officer]\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;For not easily classifiable conditions there are these interconnectivities between it and other diseases or other impairments. It\u0026rsquo;s referring through to the medical specialist to see if the person is in receipt of evidence-based treatment, and that's always on an individual basis.\u0026rdquo; [Technical Underwriting Manager ]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eIn spite of the wide prevalence of endometriosis in the Australian community, the insurance companies are seeing low levels of disclosure in applications. It\u0026rsquo;s unclear if it\u0026rsquo;s a lack of knowledge on the part of the consumer on what they need to disclose, wilful non-disclosure, poor questioning by insurers and advisors on knowing what to ask or a combination of some or all of the above. This may also in part be due to the impact of delays in diagnosis and low levels of endometriosis training in underwriting at Australian Life Underwriting and Claims Association (ALUCA) events:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;We don't see it very often. These conditions. So then, that's not a topic. Most of the time ALUCA will be covering your cardiac, your high blood pressure, your abnormal blood test. So I would say, minimal training on that aspect only enough for them to just know the name, so that if they get a call or a pre-assessment they know that this needs to go to this CMO. And chief medical officers are very heavily relied on.\u0026rdquo; [Technical Underwriting Manager ]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe uncertain impact of the high number of comorbidities on insurance outcomes in those with the disease and the evolving role of algorithmic underwriting / big data in assessment outcomes were underlying themes that intersected consumer and industry sentiments:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;This condition presents different, because it's different for different women... even having ultrasound evidence or anything else to test the severity sometimes doesn't really indicate the impairment. I think that the diagnosis, the treatment, and the recognition that it is a chronic disorder. It's not just some female problem.\u0026rdquo; [Chief Medical Officer \u0026ndash; Psychology and Mental Health]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe trustworthiness, openness and quality of evidence in health-related data questioning techniques of insurers is impacted by diagnostic and disclosure gaps in clinical medicine.[\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e] The biomedical model of insurance medicine considers observed pathology, impairment, or dysfunction to cause disability, while scholars and disability advocates who subscribe to a more social model assert that it is societies construction of disease that disables people who have impairments.[\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e] The \u0026lsquo;hidden\u0026rsquo; nature of endometriosis and diagnostic lag creates gaps in data that may perpetuate a reductionist bias of a purely bio-medical model[\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e] of underwriting endometriosis at the expense of broader considerations, best expressed in this quote:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;it's underwritten predominantly on the bio medical model. We don't take in the bias, like a social model in looking at it, and we would probably gain a lot more information if we really did that and wouldn't have necessarily a whole level of the exclusions that I see as unnecessary.\u0026rdquo; [Chief Medical Officer \u0026ndash; Psychology and Mental Health]\u003c/em\u003e\u003c/p\u003e\u003cp\u003eGendered assumptions and social stigma in insurance and healthcare\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eThe System is Broken: inadequacies and inequities in insurance coverage and financial support for endometriosis including in those who use medical cannabis\u003c/em\u003e\u003c/p\u003e\u003cp\u003eThis theme was pronounced and consistent with literature showing there are evidentiary obstacles, disparities and common misconceptions about the endometriosis disease, diagnosis, and treatment in health and insurance settings.[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan additionalcitationids=\"CR55\" citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e] Consumers, advisers and insurance sector participants mostly felt that endometriosis should be covered under more trauma insurance contracts.\u003c/p\u003e\u003cp\u003eFor our respondents, significant out-of-pocket medical expenses remain a huge challenge for those with endometriosis due to inadequate public health funding for the condition (e.g., timely diagnostic and surgical services) and private health insurance coverage gaps. Medical cannabis and certain other medications were often reported as not covered, highlighting gaps in the public and private health insurance reimbursement systems for endometriosis related medications now being more widely used in the community. Lack of awareness of contract terms and cover under income protection was a big issue for a particular claimant:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I found out through my employment that I had been paying for income protection insurance for about four years that I didn\u0026rsquo;t even know I had. Because of the endo, I had to take a lot of time off work...I went down to a casual part-time salary, and now my income protection was only giving me a couple of hundred bucks to live on. It\u0026rsquo;s not enough. I don\u0026rsquo;t know who to talk to...I can\u0026rsquo;t live, and I can\u0026rsquo;t work.\" [Banana, 25\u0026ndash;30]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eBanana gave quite vivid insights into her rollercoaster experience of successfully claiming on income protection insurance for endometriosis. She had been paying for cover at a higher sum insured while working more, then dropped her hours of work due to endometriosis, later stopped and claimed due to her endometriosis only to find her payout reduced as her insured income had reduced pre-claim. She described it as a traumatic experience, requiring her to move back home to New Zealand from Australia to be with family due to the substantial disease costs, she could no longer financially cope.\u003c/p\u003e\u003cp\u003eThe substantial cost of the illness was universally mentioned by all consumer respondents. Further, all stated that there was a significant gap between their health insurance and their out of pocket expenses as Anna expresses:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I've found private health insurance to be pretty much mandatory, because otherwise the costs are just exorbitant\u0026hellip;even with private health insurance, it's a costly venture.\" [Anna, 25\u0026ndash;30]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOur respondents overwhelmingly felt private health insurance was \u0026lsquo;essential\u0026rsquo;. Most found extras cover \u0026lsquo;critical\u0026rsquo; for managing the condition and its private costs, using it for acupuncture, pelvic physiotherapy, chiropractic and other care. Extending health insurance to cover gym memberships to promote low to moderate intensity exercise was sought after. The impact of patchy reimbursement coverage of medical cannabis costs under private health insurance was vocalised by Anna in this quote:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"A lot of gynaecological things aren\u0026rsquo;t actually covered as much as you would think they would be. I have to be on a really expensive pill, and that\u0026rsquo;s not covered. It\u0026rsquo;s not under PBS, and they\u0026rsquo;ve recently changed the pharmaceutical rebates with private health insurance, so I\u0026rsquo;m not getting anything back for that anymore. In terms of the cannabis, that\u0026rsquo;s not covered at this point in time.\" [Anna, 25\u0026ndash;30]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eSome unique insights were provided by one \u003cem\u003eindustry participant\u003c/em\u003e who also was also an endometriosis patient that consumed cannabinoids. They were able to provide a unique perspective as they were an insured medical cannabis consuming endometriosis consumer, and held insider expertise in the insurance area as they could also see the workings from the \u0026ldquo;other side\u0026rdquo; (i.e., from inside insurers). They noted that they felt there were some clear gender discrepancies \u0026ndash; mostly due to the amount of coverage that is required for time off work:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;my husband had prostate cancer this year and he had his prostate removed. He was able to go back to work 3 or 4 weeks later, and then Bob's your uncle: We got a trauma payout, so why shouldn't a woman? That\u0026rsquo;s where we are at this point. So why shouldn't a woman who has to say, undergo full hysterectomy due to endometriosis, receive a trauma payout and in full. Because that's longer time off work. That is 6 to 8 weeks!\u0026rdquo; [Business Development Professional]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThey also noted the costly nature of cannabis as a medicine, despite holding insurance.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I well, I get massage, and that helps. And I thought about getting physio for I've been told that that can be helpful. So that's something I'm looking into. So that's also important. And then, yeah, medicinal cannabis is something I use to manage my symptoms. And it's not cheap like it's but it is really effective. So I do CBD oil and like THC oil as well... If that were covered. That would be incredible, like, I don't. It's just 100. It's like a lot of money. It's hundreds of dollars for that. [Business Development Professional]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eWhen public health does not provide adequate support for endometriosis surgery, people can take out private health insurance to supplement their health care needs if they can afford it. Whilst most participants agreed it was critical, a notable outlier opinion on this vexed issue of public vs private financial support of endometriosis was best expressed in the following quote:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I don\u0026rsquo;t agree with private health insurance. I think it should all be public. But it isn\u0026rsquo;t, and I\u0026rsquo;m lucky enough to have an income that allows me to have it. So I take it out, although I don\u0026rsquo;t think anyone should have to. When I went through the surgery for my endometriosis, I did end up using my private health for the hospital phase and some of the surgery phase, but not everything was covered. Only some of it.\" [Usava, 40\u0026ndash;45]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eOnly three of the nine retail providers of trauma insurance in Australia cover endometriosis as a defined specific lump sum illness payout condition. Whilst some industry stakeholders expressed it may be a difficult one to insure, in response to considering if endometriosis should be covered in more trauma contracts, the responses point to the inequities inherent in the products on the market:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I think it's quite discriminatory that we don't have that in there. That all insurers don't offer some sort of level of cover. It is quite difficult to obtain a claim.\u0026rdquo; [Chief Medical Officer \u0026ndash; Psychology and Mental Health]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eCurrent Australian law allows early access to superannuation retirement savings on narrow compassionate grounds to fund things like medical treatments for members or a dependant.[\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e] To be eligible, medical treatment must be required to treat either a life-threatening illness or injury, alleviate acute or chronic pain, or chronic mental illness. The medical treatment must also be not readily available through the public health system. Due to very long wait times on public hospital lists, women with endometriosis have been known to cash in their superannuation to pay for endometriosis surgery by a private surgeon.[\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e] Most respondents across consumer and industry cohorts weren\u0026rsquo;t shocked at this, reinforcing that endometriosis remains in the \u0026ldquo;too-hard basket\u0026rdquo; across society:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;I wouldn't be surprised at all. I reckon there's a lot of chronic conditions that don't fall into one of our neat little boxes to get paid a benefit where people have to do that sort of thing, you know.\" [Chief Underwriting \u0026amp; Claims Officer]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003ePrevious research has shown insurance consumers with endometriosis are reluctant to discuss cannabis use with treating physicians and disclose use to life insurers when asked.[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] This type of personal history is important to insurers when assessing risk. Smoked tobacco is known to pose much higher insurance medicine risk for mortality and morbidity in humans compared to smoked or vaporised cannabis,[\u003cspan additionalcitationids=\"CR59 CR60\" citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e] however some of the responses suggested insurers were not distinguishing this risk accurately. Adviser respondents reported being able to still obtain cover for clients provided CBMPs were prescribed by a doctor, albeit some falsely were labelled as \u0026lsquo;smokers\u0026rsquo; even though they did not smoke tobacco nor did they smoke their prescribed cannabis. This meant they were charged higher premiums than they should have been even though they consumed their CBMPs via safer methods of administration (e.g., oils). The under-disclosure of cannabis use theme was best recognised by insurers in this quote when the respondent put herself in a consumer\u0026rsquo;s shoes:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;how much should I tell? I think it's more prevalent than what we're what's actually being recorded.\u0026rdquo; [Technical Underwriting Manager]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eThe implications here are that there is some recognition inside insurers that under-disclosure of cannabis use occurs amongst their client base. Strategies and questioning techniques that prompt disclosure should be encouraged to reduce stigma (particularly where the medication being taken is efficacious, improves work capacity and thus improves insurability).\u003c/p\u003e\u003c/div\u003e\u003cdiv id=\"Sec13\" class=\"Section2\"\u003e\u003ch2\u003eThe Financial and Emotional Toll of Endometriosis\u003c/h2\u003e\u003cdiv id=\"Sec14\" class=\"Section3\"\u003e\u003ch2\u003eThe gendered, hidden cost of endometriosis\u003c/h2\u003e\u003cp\u003eWomen with surgically confirmed endometriosis often reduce their working hours or even transition out the labour force following diagnosis, so supportive workplace practices, superannuation and insurance coverage / reimbursement settings to assist with managing disease costs may help women remain in or return to work.[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e, \u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e] Limited understanding of product fine print is critical in these situations, described by Alice:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"It can be a complex subject matter...there is a lot of information to absorb when you\u0026rsquo;re first being admitted to a super fund or a contract of life insurance.\" [Alice, 35\u0026ndash;40]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eMoving in and out of a job or work in Australia can trigger alterations or cancellations of previously automatically accepted, inforce life, tpd and income protection covers via superannuation and workplace group salary continuance policies. Communication on limitations in coverage when starting a new job, alterations of hours and potential cessation or continuation of cover product rules on exit of employment are key areas of vulnerability in those with endometriosis, employers and the life insurance industry, as best stated by Ruby:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\"I had to have a stand-down period of three years due to anxiety, which is kind of a fun side effect of endometriosis.\" [Ruby, 30\u0026ndash;33]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eWorkforce, health and insurance systems were not designed around the needs of women, so broad collaboration of government, professional bodies, educational and insurer industry organisations is needed to mount a sustained challenge to pervasive gender bias in health and care related industries.[\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e] This inequity was expressed by Matilda:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;we don't ask to have these conditions, but we end up paying for it in more ways. Then people don't really understand that with it not being a visible illness.\u0026rdquo; [Matilda, 25\u0026ndash;30]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003cp\u003eGender bias can create systemic complexity and ambiguity surrounding the question of discrimination in insurance that can cause financial challenges for patients as they are either not covered or paying more.[\u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e] The significant cost burden of endometriosis necessitates greater reimbursement from public health bodies and private insurance organisations to improve community outcomes. The lack of knowledge and training is expressed in the following quote:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003e\u0026ldquo;it\u0026rsquo;s the awareness. I think that's more what it is rather than in depth training on the condition. It's more awareness of what the hell it is, where it fits, into what systems it affects and what parts of any of your contracts is going to be an issue for. So that sort of training, I think, it is almost completely ignored.\u0026rdquo; [Chief Underwriting \u0026amp; Claims Officer]\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eOur findings show that people with endometriosis are being disadvantaged significantly. They are under insured, they are unfairly paying more for coverage and they have fewer choices available to them as only a small percentage of the insurance industry caters to those with endometriosis via for example, trauma contracts. Insurance companies often argue that few women (~\u0026thinsp;1%) are affected by endometriosis but the prevalence in clinical data studies (6.8%), population-based surveys/self-reported studies (6.6%), and symptomatic patient data (21%) reveals a very different picture.[\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]\u003c/p\u003e\u003cp\u003eExisting research has found that there is lack of formal education and training in \u003cem\u003eclinical medicine\u003c/em\u003e for health practitioners on endometriosis diagnosis and management [\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e, \u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e] and the endocannabinoid system [\u003cspan additionalcitationids=\"CR69 CR70 CR71\" citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e] and these gaps clearly exist from the feedback provided in the \u003cem\u003einsurance medicine\u003c/em\u003e settings of this study. About one in ten or about 100,000 women with endometriosis use cannabis for symptomatic management of the condition.[\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR73\" class=\"CitationRef\"\u003e73\u003c/span\u003e] Medicines in Australia are clinically relevant if they are generally accepted in the medical profession as necessary for the appropriate treatment of the patient. However, CBMP prescribing is not recommended as a first or even third line treatment in any clinical guidelines for any condition in Australia. Notwithstanding this, over 5,500 General Practitioners and Specialists in Australia prescribe cannabinoids, including many for endometriosis.[\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e] Therefore, updated clinical guidelines factoring in real world evidence within an evidence-based medicine framework are desperately needed as they have not been updated by public health authorities or medical colleges in Australia since 2017. This will then help evidence translation into \u003cem\u003einsurance medicine\u003c/em\u003e decision making and hopefully improve coverage for women with endometriosis.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eEndometriosis consumers had limited understanding of life risk insurances, however when coverage was obtained via financial advice on insurances with an adviser they felt more informed. Automatically obtained cover via a superannuation fund or employment or when taking out a mortgage with a bank were found to be critical juncture points for decision making on insurance.\u003c/p\u003e\u003cp\u003eBoth industry and consumers felt endometriosis as a condition being covered as a lump sum payment under more trauma insurance contracts across the sector would be a good thing given the high private costs associated with disease management. Consumers are not currently being supported adequately by Medicare or private health insurances and are resorting to premature withdrawals from superannuation retirement savings to fund endometriosis care.\u003c/p\u003e\u003cp\u003eIndustry and consumer experiences around disclosure of endometriosis (and cannabis use) with insurance companies in establishing or claiming covers varies, confirming previous findings. Asking more specific targeted questions around methods of administration so consumers aren\u0026rsquo;t incorrectly labelled or charged higher premiums as \u0026lsquo;smokers\u0026rsquo; is essential at underwriting application stage. The changing perception of cannabis use in the symptomatic management of endometriosis in society means public insurers, private health and life insurers play a critical role in helping to manage its cost and rebalancing \u0026lsquo;who pays the bills\u0026rsquo; associated with this disease. This study has implications for the financial health and well-being of the endometriosis population and the broader community.\u003c/p\u003e\u003cp\u003eEndometriosis coverage and awareness in more trauma contracts would go some way to improving financial recovery from surgical interventions and reducing the broader financial burden of the disease on women with endometriosis. Raising pharmaceutical extras claim limits for cannabinoids in private health insurance contracts is considered essential so that more women can dose appropriately to gain benefit from CBMPs and improve their capability to work and function in life. Such changes may also decrease the stigma felt by those with the condition who use cannabis and enhance their comfort in having conversations about it with doctors and insurers. It was clear in this study that consumers felt that they were not being adequately financially supported and insurance stakeholders felt they were not being provided with adequate training or adequate products to support women consumers. There is an urgent need to address the limited insurance support for women with endometriosis, including those who use cannabis.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eCBMPs\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eCannabinoid Based Medicinal Products\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eECS\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eEndoCannabinoid System\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003cdiv class=\"DefinitionListEntry\"\u003e\u003cdiv class=\"Term\"\u003eTPD\u003c/div\u003e\u003cdiv class=\"Description\"\u003e\u003cp\u003eTotal and Permanent Disability\u003c/p\u003e\u003c/div\u003e\u003c/div\u003e\u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e The study was approved by the Western Sydney University Human Research Ethics Committee (approval number H15099). Each participant provided informed consent to participate under the human research ethics approved protocol. This study was carried out according to the requirements of the Declaration of Helsinki. Clinical trial number: not applicable.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eCompeting Interests\u003c/strong\u003e\u003cp\u003eAP, JS and MA: as a medical research institute, NICM Health Research Institute receives research grants and donations from foundations, universities, government agencies and industry. Sponsors and donors provide untied and tied funding for work to advance the vision and mission of the Institute. This study was not specifically supported by donor or sponsor funding. JS is employed as the chief scientific officer for Australian Natural Therapeutics Group. JS also sits on the board of the Australian Medicinal Cannabis Association and the scientific advisory board for United in Compassion, all in a pro bono capacity. MA has previously been an advisory board member for Evolv Therapeutics, is currently an advisory board member for Nectar Brands, both of which sell medicinal cannabis products. He has previously received funding from Canopy Growth, OzMediCann Group and Cannim to run clinical studies on medicinal cannabis for women\u0026rsquo;s health conditions, outside the submitted work. AP has business dealings with life insurers on behalf of clients in a professional capacity as a practicing financial planner and lawyer. SD declares no competing interests.\u003c/p\u003e\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eAP wrote the majority of the manuscript, performed thematic coding and prepared all tables and Figure 1. SD and MA provided extensive editorial review and input into refinement of table coding and the final manuscript. JS provided input throughout both manuscript development and editing of the final manuscript script.\u003c/p\u003e\u003ch2\u003eData Availability\u003c/h2\u003e\u003cp\u003eData is provided within the manuscript or supplementary information files.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eZondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244\u0026ndash;56.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eKennedy S, Bergqvist A, Chapron C, D'Hooghe T, Dunselman G, Greb R, Hummelshoj L, Prentice A, Saridogan E. ESHRE guideline for the diagnosis and treatment of endometriosis. Hum Reprod. 2005;20(10):2698\u0026ndash;704.\u003c/span\u003e\u003c/li\u003e\u003cli\u003e\u003cspan\u003eRowlands IJ, Abbott JA, Montgomery GW, Hockey R, Rogers P, Mishra GD. Prevalence and incidence of endometriosis in Australian women: a data linkage cohort study. 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Report: Penington Institute; 2024.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"medical cannabis, endometriosis, life insurance, health insurance, insurance medicine, underwriting, Gender inequality","lastPublishedDoi":"10.21203/rs.3.rs-6083910/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-6083910/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e\u003cp\u003eEndometriosis is a complex multi-systemic disease that costs Australia \u003cspan\u003e$\u003c/span\u003e9.7Bill per annum, 84% of this cost is workplace absenteeism and lost productivity. Public insurance coverage via Medicare is limited, so access to disability, trauma and private health insurance is critically important as claim proceeds can help fund private treatments like surgery, allied health care, medications and other living costs. Patients report improved symptom management and capacity to work when consuming medical cannabis for endometriosis, however we currently do not know how this impacts people\u0026rsquo;s ability to obtain, maintain and claim on these insurance covers nor how insurers are approaching these topics.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e\u003cp\u003eSmall group and one-on-one interviews were conducted with two cohorts. One cohort consisted of ten endometriosis patients and the second cohort was comprised of nine life insurance sector stakeholders. We sought to understand how the challenges with diagnosis, treatments, co-morbidities, underwriting, product gaps, knowledge, and training on endometriosis and use of cannabis impacted experiences with insurances. Interviews took between thirty minutes to an hour and were conducted between April and December 2023. Data were analysed using thematic analysis.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e\u003cp\u003eInsurers identified gaps in their knowledge concerning endometriosis prevalence and rates of medical cannabis use amongst their customer base, compounded by a lack of training on medical underwriting and claims management around these issues. Consumers highlighted inadequacies and inequities in insurance coverage and financial support for people with endometriosis, particularly those consuming medical cannabis. Improved public health funding to reduce those with endometriosis needing to access their private superannuation savings before retirement to fund essential treatments like surgery due to public hospital delays and underinsurance, was a near universal view expressed by participants.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e\u003cp\u003eAustralian clinical and insurance medicine settings for endometriosis were found to be unfit for purpose. Systemic bias and underfunding of women\u0026rsquo;s medicine has influenced poor coverage in public and private insurances, leading to limited reimbursement settings for consumers with endometriosis compared to other chronic illness. Improving endometriosis evaluation techniques and updating guidelines on re-emerging interventions like medical cannabis are needed to improve access to financial reimbursement across public and private insurance domains.\u003c/p\u003e","manuscriptTitle":"Insurance, Endometriosis and the use of medicinal cannabis in Australia: A qualitative analysis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-08-27 05:59:07","doi":"10.21203/rs.3.rs-6083910/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"46b52faa-b294-44ca-8419-4d966f70e120","owner":[],"postedDate":"August 27th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-09-18T09:39:23+00:00","versionOfRecord":[],"versionCreatedAt":"2025-08-27 05:59:07","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-6083910","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-6083910","identity":"rs-6083910","version":["v1"]},"buildId":"WvIrzKhiLBfengagbw6Ux","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}