Amyloid : the international journal of experimental and clinical investigation : the official journal of the International Society of Amyloidosis
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Transthyretin (ATTR) amyloidosis is an ultimately fatal disease. While approved therapies slow disease progression, the cost of care can be significant for patients. The objective of this survey was to describe the factors associated with financial toxicity of ATTR amyloidosis and the economic burden of care and treatment. ⋯ Patients with ATTR amyloidosis experience significant financial distress that is comparable to patients with cancer, and as a result, many patients delay treatment or pay for treatment using savings and/or borrowing money. African American respondents (vs white) were significantly at risk.
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Accurate tissue typing in amyloidosis is essential to provide appropriate therapy for individual patients. ⋯ These data provide an assessment of the current state, enabling improvement in capabilities of amyloid typing worldwide and enhancing regional/international networks.