From Regional Patient Advocate Javier Santana
Thanks to the cooperation with the consulting doctors of the patient groups in the Central American region, new doctors from Honduras and Nicaragua have been contacted. In both countries, patients with HAE have been identified, and the necessary efforts are being made to help them understand the disease, educate them and give them tools to have a better quality of life. We hope that new patients from both countries will join the two patient groups.
The patient groups in the Central American and Caribbean region have welcomed the new tool HAEi Advocacy Academy which will help them and their members to educate themselves and develop skills that benefit patient groups.
Doctors in the region are also in the evaluation and analysis to create specialized ACARE centers. It is expected that by 2022 countries such as Panama and Costa Rica will be able to have this type of center.
Since October, the purchase of medicines for HAE has been authorized in Costa Rica, which was received with great joy by patients who have been waiting for years for approval and access to some treatment. Unfortunately, the Department of Pharmacology has not purchased the medicines, but we continue to monitor the situation and are in constant communication. Representatives of several pharmaceutical and distribution companies have already contacted government officials, and we hope that soon the specific HAE medications will be accessible to patients, specifically children who suffer attacks on a monthly basis.
The girl Samantha “Sammy” Madrigal from Costa Rica, who suffers from severe HAE attacks monthly, has developed a fundraising platform to pay for the purchase of medical treatments and services. People who wish to cooperate can do so through https://gofund.me/992a008e.
Because the COVID-19 pandemic continues, several countries in the region still maintain exit restrictions to control infections. This has made the efforts of patient groups to advance the approval of treatments in their respective countries a little more complicated.
As a global organization, we continue to provide the necessary resources and help to patient groups in the Central American region. And we are sure that by the year 2022, there will be new advances.
