I participated in an interview with Dr. Olga Barrera in Panama for a national newspaper to highlight HAE patients’ situation in the country.
In Puerto Rico, I have had several communications with Dr. Rafael Zaragoza, representatives of pharmaceutical companies, lawmakers, and legislative advisers about the reconsideration of the law that would give HAE patients access to treatment through the government’s public health insurance.
During the past few months, I have also been working with my member organizations and doctors in the region on the 2021 virtual conference project for Latin America, with recording videos and developing scripts and transcripts and checking videos. Furthermore, I have provided videos for the introductions for the presentations.
I wrote a letter to the Ministry of Health in Costa Rica in support of patients gaining access to treatments following the decision to reject drugs for HAE patients because treatments were not approved in other countries. I worked with the patients on media training and interviews to highlight the issue.
I have been in communication with a new doctor from the Dominican Republic who treats patients with HAE and is willing to help identify more patients in the country and ensure that treatments are registered in the future.
I am working with my member organizations on media training and have provided a list of the most important media contacts in their countries.
There have been some communications with CSL Behring Latin America, who informed me that the pharmacy is taking steps to enter its treatments for HAE in Panama and Costa Rica.
It should be noted that many countries are still in lockdown due to COVID-19, which is why it has made it difficult for the leaders of the member organizations to hold events, including being able to attend their medical appointments. Let’s hope in God that these challenges end soon.