From Regional Patient Advocate Javier Santana

In my region, there is still a shortage of medicines and treatments despite the efforts made by patient groups. In countries like Costa Rica, where in 2017 only about 18 patients had been identified, today about 80 people with HAE have been registered according to reports from allergy and immunology specialists who work hard to ensure that patients finally get the treatment they deserve.

Even though the Ministry of Health of Costa Rica approved the purchase of medicines for prevention and another for attacks to attend exclusively to children with HAE, hospitals are still waiting for modern and exclusive medicines after several months. On the other hand, representatives of pharmaceutical companies continue to make their efforts to introduce some modern treatments for HAE in Central America and the Virgin Islands.

New patients with HAE have been identified in Trinidad & Tobago, and it is hoped that we will be able to initiate a new representative group of patients with HAE here in the future.

I have written a column on the situation of HAE patients in the Dominican Republic. The effort has developed discussion on the HAE issue, and I have been invited to have meetings in the future with government officials to discuss HAE and coordinate events to start educating about the disease. You will find the column here: https://encontexto.com.do/angioedema-hereditario-una-enfermedad-rara-que-amenaza-la-vida-de-pacientes-en-republica-dominicana. 

In Puerto Rico, the Governor approved and signed 28 February as a national Rare Disease Day.

In Panama, a new law of rare disease has been approved by Parliament and is presently waiting for the signature of the President. This is excellent news because the law requires that patients receive their medications from a special fund administered exclusively by the Office of the President.

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