Abstract
The rise of methamphetamine-associated pulmonary arterial hypertension in the U.S. highlights a need for appropriate and effective management strategies. The complexities of Methamphetamine-Associated Pulmonary Arterial Hypertension are magnified by socioeconomic and health disparities associated with substance use disorders. This study asked: what are the experiences, barriers, and unmet needs of patients living with methamphetamine-associated pulmonary arterial hypertension? Structured interviews were conducted with 20 U.S. patients living with methamphetamine-associated pulmonary arterial hypertension. Interviews explored methamphetamine use patterns, circumstances of Pulmonary Arterial Hypertension diagnosis, treatment experiences, barriers to care, and perceptions of compassion and education during management. Participants were geographically diverse; most were female and White, with nearly half over 50 years old. Patients report having used methamphetamine almost daily, typically by inhalation; more than one-third reported use for over 10 years. At diagnosis, 60% of patients were still actively using, and half of these patients discontinued use within 1 year of diagnosis. Initial diagnosis commonly occurred in emergency departments, and delays in treatment were frequent, often related to lack of insurance or negative experiences with physicians. Patients described inadequate education and limited collaboration with substance use specialists. Compassionate care was perceived as lacking, particularly among those treated outside pulmonary hypertension specialty centers. This first-of-its-kind patient-centered study of methamphetamine-associated pulmonary arterial hypertension highlights major unmet needs in timely diagnosis, access to therapy, and provision of compassionate, informed care. Findings underscore the urgency of increasing awareness, strengthening education for both patients and providers, and integrating substance use support into pulmonary hypertension management.