During the past months, groups of people with HAE in the Central American and Caribbean region have been quite active in seeking the support of citizens and the attention of government entities to achieve access to treatments for HAE.
Countries such as Panama and Costa Rica have held meetings with important government officials to discuss the problems faced by people suffering from HAE due to the lack of medical guidelines in hospitals and the lack of appropriate medications for HAE. In addition, the representatives of the groups in both countries have been present in important national media, discussing the problems they face. This has led to an increase in citizen support. As the HAEi representative in the region, I have been able to share and discuss with doctors from both countries the medical guidelines used in other countries to draft and educate new guidelines in their respective countries.
The patient groups in the Dominican Republic, El Salvador and Cuba have continued to identify more patients and physicians who know about the disease so that they can continue to increase the number of members in groups of people with HAE.
In Puerto Rico, the House of Representatives held a public hearing to discuss a bill aimed at helping people with HAE of limited resources. Doctors with knowledge of HAE in Puerto Rico participated in the public hearing to offer details about the disease and their experience caring for people with HAE.
During hae day :-) 2021 several groups held events in their countries to raise awareness about HAE. Among some of the events were lighting of private and government buildings with the hae day :-) colors, webinars, media interviews and peaceful protests.