Top Reason for Leaving HAE Attacks Untreated, Survey Finds

A Pharvaris-funded real-world survey of physicians and patients with hereditary angioedema (HAE) identified perceived mild severity as the top reason for untreated attacks and forgetfulness as the leading cause of suboptimal long-term prophylaxis (LTP) adherence.¹

Despite multiple available LTP and on-demand treatment options for HAE, the analysis points to persistent gaps between guideline-recommended care and routine practice.² Investigators drew on both physician-reported chart data and patient-reported questionnaires to compare clinical records with patients' own treatment experiences.¹

"By incorporating both physician-reported clinical data and patient-reported experiences, this analysis provides a comprehensive view of how hereditary angioedema is managed in routine clinical practice," said Peng Lu, MD, PhD, president of Pharvaris, in a statement.²

Untreated Hereditary Angioedema Attacks in the Adelphi Real World Survey

The analysis used data from the Adelphi Real World HAE Disease Specific Programme, a cross-sectional, retrospective survey conducted in the US, Europe, and Japan from January 2023 through January 2024.¹ Participating physicians managed ≥ 2 patients with HAE per month, and eligible patients had experienced ≥ 1 attack since diagnosis.¹ Physicians (n = 225) completed online Patient Record Forms for 1131 patients aged 3 to 82 years, and 279 of these patients completed a voluntary self-reported questionnaire.¹

Female patients made up 54% of the physician-reported group and 52% of the patient-reported group.¹ In the 12 months before the survey, 48% of patients in the physician-reported group and 51% in the patient-reported group experienced 1 to 2 attacks.¹

Perceiving the most recent attack as mild, not severe, or not limiting was the top reason for leaving it untreated, cited for 54% of physician-reported patients and 59% of patient respondents.¹ According to Pharvaris, patients often withheld on-demand treatment for attacks they did not consider severe enough to justify a burdensome therapy.² Other reasons included lack of available therapy and pain associated with injectable treatments.²

Long-Term Prophylaxis Adherence and Treatment Satisfaction in HAE

Forgetting to take medication was the most common reason for suboptimal LTP adherence, reported for 45% of patients in the physician-reported group and 51% of patient respondents.¹ Anderson and colleagues characterized adherence and treatment satisfaction as remaining gaps within the HAE community.¹

Pharvaris reported patient satisfaction and decisions to change treatment were driven mostly by ease of portability, route of administration, perceived efficacy, and the odds of experiencing adverse events.¹ Treatment burden tied to route of administration, convenience, and integration into daily life continued to shape patient behavior and satisfaction.¹ Among LTP options, patients preferred daily oral treatment to biweekly or monthly injections, according to the company. ¹

The survey data predate several changes to the HAE treatment landscape, a limitation Pharvaris acknowledged in its release.²

“These findings highlight the importance of understanding how treatment decisions are made in real-world settings and the barriers that may still limit alignment with clinical guidelines,” Lu said. ²

References

1. Anderson J, Bouillet L, Busse PJ, et al. Patient experience with treatment of HAE attacks: results from a real-world survey of physicians and their patients. Adv Ther. Published online September 28, 2026. doi:10.1007/s12325-026-03790-2

2. Real-world analysis highlighting HAE disease experience and gaps in treatment satisfaction published in Advances in Therapy. Pharvaris. Published October 5, 2026. Accessed October 5, 2026. https://ir.pharvaris.com/news-releases/news-release-details/real-world-analysis-highlighting-hae-disease-experience-and-gaps