Challenges in the Management of Hereditary Angioedema in Urban and Rural Settings: Results of a US Survey.

BACKGROUND: Caring for patients with hereditary angioedema (HAE), especially rural patients, has challenges.

OBJECTIVE: To confirm experiences of allergy and immunology health professionals in diagnosing and treating HAE patients, including those living in rural settings.

METHODS: An online survey of 2996 members of a professional medical association was conducted April 13 through May 3, 2022. Eligible participants were associations members (physician, fellow, or allied health professional members) currently practicing allergy/immunology, in the United States, seeing or treating at least 1 patient with HAE yearly.

RESULTS: A total of 138 responders saw an average of 9 patients with HAE yearly; 12% of patients resided in a rural area. They reported 66% of their HAE patients had type I, 15% type II, and 19% HAE C1nl-INH. Misdiagnosis was the top diagnostic challenge reported (82%). Inability to afford treatment was the top treatment challenge (76%). Other observations include the sentiment that HAE patients with government insurance are at a disadvantage because it is not accepted by many specialists who treat HAE (64%) and that better payments for drugs from Medicaid and Medicare (57%) and better payments to providers from Medicaid and Medicare (49%) could better support the treatment of patients in rural settings. Responders expressed a preference for therapies administered at home (72%). Since the COVID-19 pandemic, 86% of respondents used telehealth for appointments occasionally.

CONCLUSION: Our findings illustrate the challenge of diagnosing HAE, especially HAE C1nl-INH, and the economic challenges of treatment, which can be compounded for those living in rural areas. We provide a call to action for addressing several of these real challenges.