During the open forum of the convention my son asked the secretary of the Philippine Department of Health. In his question Edwardson asked, "With all these chronic disorders, is there any hope that we hemophilia patients will be noticed? With us being so little, we feel like we are always the last priority." He also gave a brief speech about hemophilia cases here in the Philippines, like children as early as 7 years old already have joint deformities due to untreated chronic bleeding; that most specially in government hospitals doctors do not know how to diagnose and administer proper treatment for hemophilia patients; and that hemophilia patients have poor dental health because most dentists are afraid to treat us even for checkups.
According to the DOH Executive Secretary, there was a "funding for rare disorders" however the program ceased to exist. As a follow-up Edwardson replied that we hemophilia organizations at the moment are more concerned about educating the doctors and health workers here in the Philippines about our disorder. That we may be "rare" but our disorder has chronic symptoms, and we do need treatment from time to time. And there have been numerous time that doctors in hospitals do not know how to treat hemophilia patients properly. Indigenous patients in particular are forced to transfer to expensive private hospitals as many government hospitals and health centers refuse to treat hemophilia patients with bleeding episodes.
Mrs. Andrea Echavez also inquired about the safety of locally produced blood products available, in the case of patients with bleeding disorders as there have been hemophilia patients (among others) who have contacted Hepatitis C and other blood-borne viruses due to lack of proper screening in the 1990's and beforehand.
Also present during the event were Mrs. Malou Formalejo (president) and Mr. Rey Sarmienta (chairman) of HAPLOS, a counterpart hemophilia organization in Metro Manila. HAPI-C also got acquainted with Dr. Durhane Wong-Regner, former director of WFH and now working as one of the board members in IAPO.
Other groups present were from different organizations concerning chronic disorders both from the Philippines and others in Southeast Asia.
