From Regional Patient Advocate Javier Santana
Much of my time has been concentrated on Costa Rica, where a young mother with HAE has been hospitalized several times due to severe crises. Unfortunately, the country’s main hospital has refused to purchase and provide one of the two treatments already authorized in Costa Rica to counteract HAE attacks. HAEi and I, as Regional Patient Advocate, have maintained communications with government officials, doctors, and the media to make our opinion heard and demand that the medicine be provided to the patient who is still hospitalized. Together with HAE Costa Rica, the ANASOVI Association of Costa Rica, and legal representatives of the patients, we will continue our efforts until access to these drugs for patients with HAE in that country is achieved.
I have had conversations with local doctors and physicians from other countries to create a professional chain of reactions about the theme of HAE in Costa Rica. Also, I gave interviews to talk about the situation regarding medications and HAE patients. Furthermore, I communicated with government officials to help the specific patient. The government has informed me that it has authorized the purchase of the drugs, but at this point, none has been supplied to the patient.
If you would like to show your support to HAE Costa Rica in the efforts to help the young patient, please visit www.facebook.com/aehcostarica.
After the 2022 HAEi Global Leadership Workshop in Frankfurt, Germany, many Member Organization leaders in my region have been organizing new plans for their countries to share the workshop information with the members. I have offered to help them to present the different HAEi programs and explain them to other patients and doctors.
Recently I have been in contact with Rosa Maria Pérez, the national contact of HAE Cuba. Fortunately, Cuba has managed to acquire Berinert in case of severe attacks where the health and life of the patient is exposed. I have put Rosa Maria and her doctor in contact with doctors from Colombia and Panama so the doctor could have more information from colleagues treating patients in their countries.
I have also been communicating with the HAE El Salvador national contact Raquel Fuentes. She has informed me about her new role as the group leader and how the workshop gave her more positive energy to get treatment in her country. She has coordinated a meeting in a hospital to speak with medical personnel about HAE, and she will give an interview to a national newspaper. Information about HAE and graphics designed by HAEi has been sent to her to use during the interviews and to share with the media.