Consequences of Insurance Coverage Delays and Denials for Patients With Hereditary Angioedema

Area of Science:

• Medical Genetics
• Health Services Research
• Patient Advocacy

Background:

• Hereditary angioedema (HAE) is a rare, potentially fatal genetic disorder characterized by recurrent angioedema episodes.
• While advanced therapies improve quality of life, insurance-related issues like delays and denials are increasingly prevalent.

Purpose of the Study:

• To investigate the impact of insurance delays and denials on the health and well-being of individuals with HAE.
• To understand how insurance challenges affect healthcare access, daily life, and psychological state.

Main Methods:

• A mixed-methods approach involving an online survey and focus groups with 20 HAE patients experiencing insurance issues.
• Thematic saturation analysis was used to code focus group transcripts, identifying key patient experiences.

Main Results:

• 70% of HAE patients reported increased attack frequency due to insurance delays/denials.
• Over 50% missed work/school days, 90% experienced heightened anxiety, and 25% had more urgent care/ED visits.
• Patients cited medication access loss, insufficient policy change notification, and retrieval efforts as major stressors.

Conclusions:

• Insurance delays and denials significantly exacerbate HAE patient experiences.
• Key impacts include increased emergency visits, missed work/school, elevated anxiety, and negative effects on family life.
• Addressing insurance barriers is crucial for improving the overall well-being of HAE patients.