The following is a summary of “Challenges in the management of hereditary angioedema in urban and rural settings: Results of a United States survey,” published in the June 2023 issue of Allergy, Asthma & Immunology by Meadows et al.

Providing care for patients with hereditary angioedema (HAE), mainly rural patients, presents obstacles. Confirm the experiences of allergists and immunologists in diagnosing and treating patients with HAE, including those in rural areas. From April 13 to May 3, 2022, an online survey of 2,996 American College of Allergy, Asthma, and Immunology members was conducted. Association members (physicians, fellows, or allied health professionals) currently practicing allergy or immunology in the United States and seeing or treating at least one patient with HAE per year were eligible to participate.

About 138 responders saw an average of 9 HAE patients annually; 12% resided in rural areas. Around 66% of their patients with HAE were diagnosed with type I, 15% with type II, and 19% with HAE C1nl-INH. Misdiagnosis was cited as the leading diagnostic obstacle 82% of the time. The inability to pay for treatment constituted the most significant barrier (76%). Other observations include the belief that patients with HAE who have government insurance are at a disadvantage because it is not accepted by many specialists who treat HAE (64%) and that improved payments for drugs from Medicaid and Medicare (57%) and improved payments to providers from Medicaid and Medicare (49%) could better support the treatment of patients in rural areas. 

The majority of respondents (72%) favor therapies administered at home. Since the 2019 coronavirus disease pandemic, 86% of respondents have occasionally utilized telehealth for consultations. Researchers’ findings illustrate the difficulty of diagnosing HAE, particularly HAE C1nl-INH, and the economic difficulties of treatment, which can be exacerbated for rural residents. The researchers offer a call to action for addressing these actual problems.

Source: sciencedirect.com/science/article/abs/pii/S1081120623001709