From Regional Patient Advocate Javier Santana
The patient group in Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics like new treatments, research, and COVID-19 vs. HAE. As a representative of HAEi, I gave a presentation on advocacy and the process of getting HAE medicines to countries through governments and their departments. Dr. Marc Riedl from the US HAEA Angioedema Center in California was the main speaker and special guest. There were also presentations by Dr. Anardi Agosto, who is President of the Association of Allergists and Immunologists of Puerto Rico, as well as the Past President, Dr. Rafael Zaragoza. Furthermore, pharmaceutical representatives took part in the event.
During a visit to the Dominican Republic, I had several meetings with doctors and visited the Vice Minister of Health. I also had a chance to meet with the Medical Director and Sub Director of the Children’s Hospital of Santo Domingo, as well as with a doctor of the Department of Allergies and Immunology of the Hospital in Santo Domingo, who is Vice President of the Dominican Society of Asthma, Allergies, and Immunology. As part of my visit, interviews were conducted with the media on HAE and how it is reflected in the Dominican Republic. A further visit is being planned to hold meetings with other medical specialists and prepare for the first medical conference on HAE at the University of Medicine of the Dominican Republic.
As the first modern HAE medication in Costa Rica, Berinert has been approved and purchased by the Ministry of Health and will be available in the country’s hospitals. Quite understandably, patients and medical specialists have received this news with great joy and emotion.
I congratulate President Diana Madrigal from HAE Costa Rica, Dr. Adrian Yong, Lisa Layera, lawyers, the members of HAE Costa Rica, and especially Samantha “Sammy” Madrigal, who at 11 years old decided to stand up to government gigantism, expose her life story publicly, and fight for her right to health and life. The Supreme Court of Costa Rica has ruled in favor of Samantha Madrigal in a lawsuit demanding the right to receive treatment for her health condition and the right to have a better quality of life. At HAEi, we are very happy about your achievement and grateful for having been part of the process. News such as this from Costa Rica is what motivates us to continue working hard so that HAE treatments reach other countries.
