FUNDAVHIP: THE STORY OF FUNDAVHIP
By Anabell Sivira, Founder
The Venezuelan Foundation for Pulmonary Hypertension (FUNDAVHIP) was created as a response to the insignificant amount of information in Venezuela regarding PH. From there, a group of patients and a dedicated physician began the arduous task of making the disease known and getting other doctors interested in caring for PH patients.
Before FUNDAVHIP there was only one doctor in the entire country that saw PH patients: Dr. Douglas Olivares. After my diagnosis, another patient I knew left for Miami in search of treatments because in Venezuela there was nothing to guarantee that one would live. The Social Security system here did not cover her medication (Flolan) and she left Venezuela for good. I was taking only Sildenafil, and for a while I was fine with just this medication. However, my disease started to progress and Dr. Olivares prescribed Bostentan. But there was no information or any government coverage for such an expensive medication. As a result, we decided there was a need to create a PH foundation in Venezuela because so many others were facing the same problems.