HEORStrategies’ scientist Dr. Naomi Sacks, along with clinicians and industry leaders, is a co-author of a study just published in Orphanet Journal of Rare Disease. Dr. Sacks and her co-authors examined the burden of illness and mortality in men with adrenomyeloneuropathy (AMN), a rare neurodegenerative disease phenotype of X-linked adrenoleukodystrophy (ALD). Using large national insurance claims databases, they found that adult men with AMN had significantly higher rates of hospitalizations, outpatient healthcare visits, and prescription medications compared with similar men without AMN. They also found that adult men who had AMN and Medicare insurance coverage died at significantly younger ages compared with male Medicare enrollees without AMN. Mortality rates among younger men with Medicare coverage (< age 65) and AMN were over five times higher than similar men without AMN. Dr. Sacks and her co-authors note that their study highlights the substantial and previously unrecognized burden of this rare disease.
