This study quantifies the 'out-of-pocket' expenses incurred by individuals with amyotrophic lateral sclerosis (ALS) and their families, explores cost-driving factors and describes the current state of financial support in a Canadian cohort. We performed structured cost-of-illness interviews with 50 consecutive ALS patients and family members detailing disease-specific factors, direct and indirect costs. Direct costs were divided into 'out-of-pocket' and 'government/non-profit organization (NPO) supported'. Results showed that the average annual direct cost per patient was $32,337, of which $19,574 (61%) was paid for out-of-pocket. The most significant direct cost was disease-related home renovations, which garnered minimal government or NPO support. The costs of mobility aids, medical expenses, and private personal support workers were also substantial. Higher out-of-pocket costs were associated with an ALS Functional Rating Scale gross motor subscore of ≤ 6 (p = 0.03), limb-predominant symptoms (p = 0.04) and > 4 h/week of personal support care (p = 0.005). Annual indirect costs (lost wages) for patients with ALS and family members providing care were $56,821. In conclusion, this study quantified the substantial personal economic impact of ALS as measured by non-reimbursed, out-of-pocket expenses. Mobilization of additional resources for ALS patients and families is required to soften the economic burden of this disabling disease.

Klinefelter syndrome (KS), karyotype 47, XXY, is a common cause of hypogonadism in males. Patients with this condition often experience symptoms of gonadal failure, which can precipitate gender identity challenges. Treatment with testosterone replacement therapy (TRT) can combat these symptoms by improving sexual function, muscle mass, bone health, and virilization, thereby enhancing the quality of life (QOL). Although TRT is often employed in patients with KS, there is a concern that the application of exogenous testosterone may increase the risk of prostate adenocarcinoma development and progression. We report the case of a 58-year-old male with KS who is also diagnosed with prostate adenocarcinoma and wished to remain on TRT post-radiation therapy in support of his gender identity and QOL. We describe the challenges this patient faced when balancing a rising prostate-specific antigen level and risk of cancer recurrence with his QOL.