HAE in Mexico: Challenges, Progress & Hope

In this episode, host Thomas Buttgereit speaks with Dr. Francisco Contreras, pediatric allergist and head of the Angioedema Clinic at the National Institute of Pediatrics in Mexico City, about the current challenges and progress in treating hereditary angioedema (HAE) in Mexico. They discuss:🔹 Why is HAE still underdiagnosed in Mexico? 🔹 What testing and treatments are currently available? 🔹 How is access influenced by Mexico’s divided healthcare system? 🔹 What can help improve HAE care for children and rural patients? Dr. Contreras shares his frontline experience treating pediatric patients with HAE and outlines the systemic barriers — from limited awareness among physicians to inconsistent access to diagnostic testing and long-term therapies. He also discusses how national registries, physician training, and patient advocacy are shaping the future of HAE care across Mexico. Join us for an honest, informative conversation about improving rare disease care in resource-diverse settings. Key Learnings from the Episode:HAE is significantly underdiagnosed in Mexico, with only 14–21% of estimated pediatric cases identified. Lack of awareness among general physicians is a major barrier — even though lab tests (C4, C1 inhibitor) are available in urban centers. Specialized testing is often limited to private or large public hospitals, delaying diagnosis for rural and underserved patients. Pharmaceutical industry partnerships help provide diagnostic support and access to genetic testing. Available treatments include: C1 inhibitor (plasma-derived) for on-demand and prophylaxis Icatibant for acute attacks Limited access to newer therapies, especially for long-term prophylaxis Mexico’s fragmented healthcare system affects treatment availability — with different access across social security, military, private, and public services. Off-label treatment is required for pediatric HAE patients with normal C1 inhibitor and confirmed mutations. Childhood obesity complicates dosing, as adult doses are sometimes needed in children with higher body weight. Patient advocacy organizations are playing a growing role in awareness and support. Registries and awareness campaigns are underway to improve diagnosis and physician education. Dr. Contreras and colleagues aim to establish the first ACARE center in Mexico, boosting access and research. Early diagnosis and collaborative care are essential to improving patient outcomes and quality of life. Chapters 00:00 Introduction to HAE and Guest Background 03:17 Current Situation of HAE in Mexico 05:35 Challenges in Diagnosis and Treatment 08:02 Available Treatments for HAE 09:47 Access and Prescription Challenges 12:28 Patient Advocacy and Future Improvements 14:10 Final Thoughts and Collaboration Do you have suggestions for future episodes? Please provide feedback and offer your suggestions for future topics and expert selection here.Feedback form ATA: ⁠⁠⁠⁠⁠⁠⁠⁠https://forms.office.com/e/ZWxx3D4Cmr⁠⁠