Transthyretin amyloidosis cardiomyopathy (ATTR-CM) is a rare and progressive condition. There are significant diagnostic gaps in the Black community. A session at the AMCP 2025 Annual Meeting addressed the complexities of health disparities that affect this disease and important managed care considerations.
Early diagnosis of ATTR-CM is crucial to slowing the disease progression, but awareness of the condition is still lacking. In addition, Black individuals face particular gaps in care related to time to diagnosis, disease burden, and clinical trial representation.
The overall median time from symptom onset to ATTR-CM diagnosis is 2 to 3 years; a study found that Black women are diagnosed about 7 years later than men, possibly due to healthcare access issues or later symptom onset.
ATTR-CM clinical trials also have low participation by Black individuals, who represent just 14% of all participants. The V122I mutation, which is common in Black individuals, was significantly underrepresented in clinical trials, identified in just 1% to 2% of participants.
Another socioeconomic challenge related to ATTR-CM is the cost of treatment, with available options totaling more than $240,000 annually; uninsured and underinsured populations face even greater financial challenges.
A study of 564 US participants found that more than half (55%) experience some financial toxicity in managing ATTR-CM, a rate that is comparable to that for patients with cancer. Nearly half of patients (43%) reported using savings, borrowing money, or making tradeoffs (eg, selling their house) in order to pay for treatment.
The study found that the average monthly payment to manage ATTR-CM was $711. A fifth of patients reported delaying treatment due to costs or insurance coverage, and three-quarters of those who participated in clinical trials said they did so to access free treatment.
Increased provider awareness of the condition, implementing routine screening, and using genetic testing are important tactics to enhance early detection of ATTR-CM. Financial assistance and policy initiatives that reduce cost barriers, particularly for Black individuals, will further impact outcomes for this patient population. Outreach programs and cultural competency training for healthcare professionals can help improve care and patient engagement.
This session was supported by an independent medical education grant from BridgeBio Pharma, Inc.
Reference
Gale S, Poyant E, Clarke G, Reiter D. Advancing equitable transthyretin amyloidosis cardiomyopathy (ATTR-CM) management strategies in managed care. Session D2. Presented at: AMCP 2025; March 31-April 3, 2025; Houston, TX.
