Quezon City Circle and the Municipal complex of Baliwag beamed red on Tuesday night as part of the global campaign called Light It Up Red aimed at raising awareness on hemophilia and inherited bleeding disorders.
April 17 is celebrated as World Hemophilia Day which was started by the World Federation of Hemophilia (WFH) in 1989. In the Philippines, President Arroyo signed President Proclamation 1478 designating the month of April as National Hemophilia Awareness Month and April 17 as National Hemophilia Day.
“We are grateful to Mayor Herbert Bautista of Quezon City and Mayor Ferdie Estrella of Baliwag for their support. This year’s global theme, “Sharing Knowledge Makes Us Stronger,” is very apt for the situation of the Philippines,” said Andrea Trinidad-Echavez, president of Hemophilia Advocates-Philippines (HAP).
She said that while the WFH pegged the number of Filipinos with hemophilia at 10,000 and those with von Willebrand Disease at 1-million, only a dismal 1,500 have so far been registered.
Bleeding disorders are a group of medical conditions where the blood does not clot. Its symptoms include frequent nosebleeds and gumbleeds, unexplained and excessive bleeding from cuts or injuries, or after surgery or dental work; large or deep bruises; or unusual bleeding after vaccinations. Women with bleeding disorders may experience prolonged and heavy menstruation.
“The more we share about hemophilia and related bleeding disorders, the more people become aware of their symptoms. We hope that with increased awareness, those who are suffering in silence or may be misdiagnosed, will finally get help,” Echavez said.
The Philippine hemophilia community held a one-day exhibit at the Glorietta Mall-Palm Drive Activity Center in Makati City last Sunday, where experts talked about hemophilia, mental health and chronic disorders.
The event was co-organized by HAP and the Philippine Children’s Medical Center. At least 2,000 people were estimated to have participated in the event which included a medical and dental mission by Go Share, another non-profit organization.
Dr. Eric Tayag, who represented Health Secretary Francisco Duque III, said in his speech that the Department of Health would be creating a technical working group to develop a national policy to address blood disorders such as hemophilia, thalassemia and aplastic anemia.
“Currently, there is no national integrated policy on the prevention, control and management of hemophilia and other bleeding disorders. The absence of such national policy prevents a comprehensive whole of sector and health systems approach to address the various concerns of health professional organizations, patient organizations and civil society groups, clamoring for improved access to standard medical care and services including screening, diagnostic tests and adequate treatment,” Tayag said.
Meanwhile, Sen. Joel Villanueva, author of Senate Bill 1335 assured the hemophilia community that he would continue pushing for the passage of the measure. If passed into law, it will mandate the creation of Hemophilia Treatment Centers (HTCs) all over the Philippines and provide free treatment for persons with hemophilia and bleeding disorders.
Senate Bill 1335 is co-authored by Sen. Nancy Binay. Sen. JV Ejercito also sponsored a similar measure under Senate Bill 1389. Two counterpart bills, House Bill 5355 and House Bill 6986, have also been filed in the House of Representatives authored by Rep. Alfred Vargas and Rep. Bernadette Herrera-Dy, respectively.