The Utah Amyloidosis Program was launched in 2015 as a collaboration between the Divisions of Hematology and Hematologic Malignancies (Tibor Kovacsovics, MD), Cardiology (Jose Nativi-Nicolau, MD) and Nephrology (Jo Abraham, MD) focused on improving care for patients with amyloidosis—a rare but serious protein deposition condition affecting multiple body systems. Since that time, the multidisciplinary program has expanded to include specialists in Neurology (Kelsey Barrel, MD), Pulmonology (Chak Reddy, MD), and Gastroenterology (Luke Gessel, MD).
For patients with amyloidosis, improved quality of life and outcomes hinge on accurate diagnosis and swift treatment requiring care coordination from multiple specialties. Advanced stages of the disease have a median survival of 6 months. The clinical manifestations of amyloidosis include symptoms seen in common conditions, leading to a delay to diagnosis of more than 1 year in up to 50% of patients. The Amyloidosis Program physicians have introduced diagnostic algorithms with advanced techniques for a rapid and early diagnosis. Over the past four years, the Utah Amyloidosis Program has seen their annual new patient referrals grow by over 200% as they have become a regional referral center and a national center of excellence.
The Utah Amyloidosis Program physicians are also actively engaged in educational and research activities. They offer multiple clinical trials and were part of a landmark trial for treating wild-type cardiac TTR Amyloidosis, through which the first FDA approved medication for this indication, Tafamadis, is expected later this year. As part of their education and outreach activities, they regularly participate in grand rounds throughout the region and they will be hosting their second biennial Amyloidosis Symposium on Friday, May 17th bringing experts from around the world representing specialties including hematology, cardiology, neurology. Registration and more information on the symposium can be found at https://medicine.utah.edu/amyloidosis-symposium/
To refer a patient for evaluation to the Amyloidosis program, simply type “Amb referral to Amyloidosis” in Epic or contact Jared Cowley, program RN coordinator, at Jared.cowley@hci.utah.edu or call 801-587-4659. Additional information about the program can be found at https://healthcare.utah.edu/amyloidosis/