Patients with transthyretin amyloidosis, including transthyretin amyloid cardiomyopathy (ATTR-CM), face a level of financial distress comparable to patients with cancer, according to a study recently published in the journal Amyloid.
Recent therapeutic advancements have resulted in the approval of several drugs to treat ATTR amyloidosis. However, because it is such a rare disease, many of these drugs are extremely expensive; this leads to what researchers call “financial toxicity,” which is the financial burden of the cost of care on patients and their families.
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The study’s authors examined data from an online survey conducted by the Amyloidosis Research Consortium on patients with transthyretin amyloidosis and their caregivers. The survey was conducted between August 2021 and January 2022. The survey touched on various aspects of the patient experience, with a particular focus on financial toxicity, which was measured using a score originally designed to measure the financial distress of patients with cancer.
A total of 452 eligible responses were collected; 387 were from patients, while 65 were from caregivers. A total of 249 patients (55%) gave responses that met the threshold for financial toxicity. Individuals with financial toxicity were more likely to be younger, non-white, not retired and have a household income under $100,000. Among the ways patients with financial toxicity offset the cost of treatment were the use of savings (47% of respondents), borrowing money (9%), and making trade-offs (i.e., lifestyle sacrifices such as reducing travel) (28%).
Respondents who experienced financial toxicity were more likely to express a sense of losing control of their finances, resulting in stress, frustration at work and feeling that they were trapped in a position in which they had no choice but to spend money on their care.
Worryingly, it appears that financial constraints may have a direct impact on whether patients choose to seek treatment at all. Researchers found that patients who experienced financial toxicity gave considerable weight to factors such as insurance coverage and out-of-pocket costs when deciding whether or not to pursue treatment.
This survey has a relatively large sample size and represents the first of its kind among patients with ATTR amyloidosis, according to researchers.
“Patients with ATTR amyloidosis face substantial financial distress akin to that experienced by cancer patients, despite innovations in treatment and ongoing trials with diverse mechanisms of action,” they concluded.
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