The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022

To determine the financial impact of Ehlers-Danlos syndromes (EDS) on patients in the United States by examining the medical expenses incurred by patients.

We used a convenience sample approach and disseminated a self-reported survey questionnaire to individuals with EDS via patient advocacy organizations and support groups across the country, social media, and health professionals from April 1, 2023, to December 31, 2023. The survey focused on the out-of-pocket medical expenses incurred by patients.

The final analytic data set included 884 responses. Responses were received from individuals in all 50 states and the District of Columbia. More than 50% reported individual income less than $25,000, and more than 30% reported household income less than $50,000. More than 80% of respondents had some type of commercial insurance and 29% reported receiving Medicaid. Respondents received more financial assistance from their family and friends than from government sources. The total median out-of-pocket financial cost by our analysis was $13,450 (IQR: $6500-$25,800). Of the 838 who responded to the question, "Did the affected person receive the health care they needed?", 19% answered "no", 51% answered "yes, sometimes", and 30% answered "yes, most of the time".

The factors contributing to financial impact include both direct and indirect costs of accessing and receiving medical care. Our study findings highlight the magnitude of the burden of health care spending on patients with EDS.