Barriers Accessing Treatment at HTCs in US PWH

Treatment, Outcomes, and Access to Care Among Young Adults With Hemophilia in the United States HERO Study

NHF 2014 (Washington DC, September 18-20) HERO (Hemophilia Experiences, Results and Opportunities) is an international initiative aiming to build a comprehensive understanding of life with hemophilia as seen from the perspective of people with hemophilia, their families and their healthcare providers. The HERO study was performed in over 1200 patients/caregivers in 10 countries including the US and consisted of separate internet questionnaires for US adult patients and caregivers of affected children.

In the US, 189 adults with hemophilia responded to the HERO study questionnaire according to data presented at the National Hemophilia Foundation (NHF) 2014 Annual Meeting. Out of the 189 adults that responded, 66 were young men aged 18-30 (median: 26) years. The reported diagnosis included hemophilia A (58%), hemophilia B (21%) and hemophilia A or B with inhibitors (21%). Most of the YA-PWH were Caucasian (77%) with 50% receiving prophylaxis and 24% receiving on-demand treatment. Furthermore, out of the YA=PWH who responded, only 27% used treatment medication as prescribed, with 27% using less than prescribed and 21% reported their use as varied (sometimes more/less). Some of them (26%) reported issues with access to factor replacement therapy in the prior 5 years due to availability or affordability, with 82% citing financial issues. For all of the responders, HTC visit frequency was a median of 1 per year with 21% reporting difficulty in visiting the HTC, and the most common reasons being accessibility (79%), including distance to travel (57%) or time to travel (29%). Patients reported that the healthcare professionals “involved in management of hemophilia” were most commonly the hematologist (83%) and the hemophilia nurse (67%). YA-PWH less commonly mentioned the social worker (48%) or the physical therapist (26%) as being “involved in management”. When looking to the future (very pessimistic=1 to very optimistic=7), this population was generally optimistic, with a median score of 5.


The HERO study (NCT01322620) was sponsored by Novo Nordisk A/S.