LUPUS AWARENESS MONTH 2024 CAMPAIGN – Raising Awareness, Inspiring Change
For equitable access to care and treatment
Lupus is a chronic disease characterized by inflammation that can target any organ in the body, in any individual, at any point in their lives. The cause remains unknown and a cure does not exist. Like putting the pieces of a puzzle together, diagnosing lupus can be challenging due to its diverse symptoms. Symptoms – appearing primarily between 15 and 44 years of age – can be complex and difficult to diagnose, resulting in the nickname: the disease of 1000 faces [5]. A lupus diagnosis can reduce one’s quality of life due to the inability to work, reduced social and family ties, and stress due to fear of the future.
The costs of living with lupus are substantial, while many will only think of the direct costs (i.e. paying for medication) associated with living with an autoimmune disease, there are extensive indirect costs (i.e. paying for childcare) that attribute to financial hardships for those living with lupus [5]. Distinguishing between the direct and indirect costs is complicated by various factors such as geography, ethnicity, income level, and disease severity. Equitable policies and treatments have the ability to alleviate some of the costs associated with living with this disease [5].
Healthcare across Canada differs by province, leading individuals throughout the country to have different access to treatment and different levels of care [5]. Advocacy is needed at all government levels to adopt policies that allow affordable access to lupus treatments, care and medications [1]. Currently, there is no comprehensive disability legislation or universal definition of disability in Canada. Typically, a condition qualifies as a disability if it significantly hinders day-to-day activities and persists over an extended period. According to this standard, only certain individuals with lupus may qualify for disability benefits [5]. However, these programs have strict eligibility criteria and may not be feasible options for those with lupus [5]. Prolonged wait times for specialists, delaying diagnosis and treatment, further complicate efforts to advocate for workplace support and accommodations and ultimately can increase overall costs [5]. It is crucial to ensure all lupus patients can access necessary care without facing financial hardship.
As we approach Lupus Awareness Month in May, Lupus Canada would like to invite you to join us in helping to raise awareness and inspire change for all Canadians impacted by lupus. Equitable access to care and treatment are required to create preventative strategies to help better support those impacted by lupus.
Therefore, Lupus Canada would like to outline three principal socioeconomic impacts of living with lupus in Canada:
- Quality of Life: Physical and psychosocial health issues such as fatigue, ‘flares’, and ‘brain fog’ further hinder daily activities, social support and work productivity. Lupus often incurs unforeseen expenses like home modifications and transportation costs for medical appointments, not covered by insurance. These financial strains, alongside employment instability, can increase the feelings of stress and intensify the already significant challenges of coping with the disease [5].
- Healthcare: Patients with lupus encounter significant financial hurdles in accessing healthcare, including lengthy wait times for specialist appointments, which lead to delays in diagnosis and treatment [3]. Uncertainty during pre-diagnosis and postdiagnosis of living with SLE contributes to the impairment of health-related quality of life in patients with SLE [4]. While medication costs are a major concern, other financial challenges faced by lupus patients often receive less attention [5]. Recognizing these financial struggles is crucial in advocating for equitable access to care and treatment for all Canadians affected by lupus. Through a supportive community of advocates, efforts are underway to address these challenges and ensure that individuals with lupus receive the care and support they need.
- Employment and Workplace: Living with lupus presents significant challenges in maintaining employment, leading many individuals to face altered career paths and financial strain [6]. Those living with lupus often transition to alternative careers or part-time employment to accommodate their health needs, often facing lower pay and job insecurity [6]. Sustaining employment can be difficult due to the disease’s unpredictability and the lack of understanding in the workplace. Symptoms may be dismissed as ‘normal,’ leading to limited empathy and support from colleagues and employers. Spouses often have to work past retirement and/or longer hours to compensate for lost income [5]. Lupus is often not recognized by disability policies, leaving patients feeling unsupported and vulnerable to benefit cuts. Financial support requires lupus patients to have workplace insurance to cover the medication they require, to have the funds to manage the side effects from medication (dental work, wigs due to hair loss), and to qualify for government assistance. The specific challenges of lupus for employment (eg, fatigue, invisibility to others, periodic flares) are not captured by current legislation despite one fifth of those with lupus being unable to work [2].
Canadians living with lupus face challenges in managing their health while advocating for equity in their lives. Understanding how patients, healthcare professionals, employers, and disability benefit providers define and understand disability is crucial [5]. Lupus Canada, being the only national organization focused on lupus research, advocacy, awareness and education in Canada allows us the opportunity to make an impact for those living with this debilitating disease. Lupus Canada plays a leadership role in drawing upon the best resources from across the country and focuses on priorities that benefit all Canadians and their families who are impacted by lupus.
While we work towards a life without lupus, patients managing the disease deserve equity at home, in the workplace, and in society. Let’s continue fighting for equity, resources, and support for those living with lupus!
Sources:
1. Hasan, B., Fike, A., & Hasni, S. (2022, November). Health disparities in systemic lupus erythematosus—a narrative review. Clinical Rheumatology, 41(11), 3299-3311. https://doi.org/10.1007/s10067-022-06268-y
2. Cardwell FS, Dixon J, Clarke AE, et al. Canadian workplace experiences of systemic lupus erythematosus (SLE). Lupus Science & Medicine 2021;8:e000536. doi:10.1136/lupus-2021-000536
3. Schlencker A, Messer L, Ardizzone M, et al. Improving patient pathways for systemic lupus erythematosus: a multistakeholder pathway optimisation study. Lupus Science & Medicine 2022;9:e000700. doi:10.1136/lupus-2022-000700
4. Leung, J., Ra, J., Baker, E.A., & Kim, A.H.J. (2019, May). “…Not Having the Real Support That We Need”: Patients’ Experiences With Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support. ACR Open Rheumatology, 1(3), 135-144. https://doi.org/10.1002/acr2.1020
5. Dixon J, Cardwell F, Clarke AE, Elliott S. Choices are inevitable: A qualitative exploration of the lifecosts of systemic lupus erythematosus. Chronic Illness. 2022;18(1):125-139. doi:1177/1742395320910490
6. Cardwell FS, Dixon J, Clarke AE, et al. Canadian workplace experiences of systemic lupus erythematosus (SLE) Lupus Science & Medicine 2021;8:e000536. doi: 10.1136/lupus-2021-000536
7. Cardwell FS, Elliott SJ, Barber MRW, et al. Canadian patient experiences of lupus nephritis: a qualitative analysis. Lupus Science & Medicine 2023;10:e000982. doi:10.1136/ lupus-2023-000982