Ahmad Masri, M.D., emphasizes that transthyretin amyloidosis (ATTR) is no longer a rare or untreatable disease, with more treatment options and clinical trials available now than ever, allowing patients to live longer and healthier lives.
By
Lana Pine
| Published on November 18, 2024
5 min read
There has been a significant shift in the understanding and diagnosis of transthyretin amyloidosis (ATTR) over time. What was once considered a rare disease is now recognized as relatively common.
In an interview with The Educated Patient, Ahmad Masri, M.D., director of the Hypertrophic Cardiomyopathy Center at Oregon Health and Science University, discusses his advice for patients newly diagnosed with ATTR.
For patients who receive a diagnosis, Masri emphasizes the importance of confirming the accuracy of that diagnosis. He encourages patients who have any doubts or discomfort to seek additional guidance — not necessarily through second opinions alone but also by connecting with reputable support groups and experienced patient advocacy organizations, which can provide valuable navigation in managing the disease.
Masri also stresses that while ATTR is not a curable condition, it has become an addressable one. He advises patients not to rely too heavily on the information they find online, as it often paints a more pessimistic picture than is warranted today. He believes that much of what appears in search engine results is outdated and emphasizes that it is crucial to keep an open mind and maintain a direct line of communication with healthcare providers.
Currently, there are commercially available therapies for ATTR, but they target only one aspect of the disease. Masri highlights the importance of patient involvement in clinical trials, pointing out that without past participation, current therapies would not be available. He encourages patients to consider participating in clinical trials, especially when they do not require changes to their existing treatment plans. He notes that many investigational therapies have an excellent safety profile, and urges patients to discuss this with their physicians to explore potential opportunities.
Masri is optimistic about the progress in ATTR treatment, stating that “we are lucky to be in 2024,” where multiple options are emerging for patients. Additionally, his clinic is currently conducting four clinical trials in this field. It is an exciting time, he says, as patients are now able to lead longer, healthier lives and pursue their personal goals with greater ease.