Hemophilia advocates express support for bill seeking creation of treatment centers
Published Apr 20, 2018 11:17 am
By Hannah Torregoza
A group of Filipino hemophilia advocates have expressed their support to the passage of a measure seeking government funding and the establishment of treatment centers for persons with bleeding disorders nationwide.
Sen. Joel Villanueva (Senate of the Philippines Facebook page / MANILA BULLETIN)
Hemophilia Advocates-Philippines (HAP) president Andrea Trinidad-Echavez said Senate Bill 1335, filed by Sen. Joel Villanueva, specifically seeks the creation of Hemophilia Treatment Centers in the Philippines to provide support for persons suffering the disease and related bleeding disorders.
“The more we share about hemophilia and related bleeding disorders, the more people become aware of their symptoms,” said Echavez, who herself has von Willebrand disease, a type of bleeding disorder.
“We hope that with increased awareness, those who are suffering in silence or may be misdiagnosed, will finally get help,” she added.
The World Federation of Hemophilia (WFH), a US-based humanitarian organization, has pegged the number of Filipinos with hemophilia at 10,000 and those with von Willebrand Disease at one million. Of the given number, only a dismal 1,500 persons with bleeding disorder have so far been registered.
Early this week, the group celebrated World Hemophilia Day, which was started by the WFH in 1989, at the Quezon City Circle and the municipal complex of Baliwag on Tuesday as part of the global campaign called “Light It Up Red” aimed at raising awareness on hemophilia and inherited bleeding disorders.
It was former President and now Pampanga Rep. Gloria Macapagal-Arroyo who signed Proclamation 1478 designating the month of April as National Hemophilia Awareness Month and April 17 as National Hemophilia Day.
Likewise, the Philippine hemophilia community held a one-day exhibit at the Glorietta Mall-Palm Drive Activity Center in Makati City on Sunday.
The event was co-organized by HAP and the Philippine Children’s Medical Center (PCMC). At least 2,000 people were estimated to have participated in the event, which included a medical and dental mission by Go Share, another nonprofit organization.
Dr. Eric Tayag, who represented Health Secretary Francisco Duque III, said the Department of Health will create a technical working group (TWG) that would formulate a national policy to address blood disorders such as hemophilia, thalasemmia, and aplastic anemia.
“Currently, there is no national integrated policy on the prevention, control and management of hemophilia and other bleeding disorders,” Tayag said.
“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,” he stressed.
Villanueva assured the hemophilia community that he would continue pushing for the passage of the measure.
Once passed into law, Villanueva said it would mandate the creation of Hemophilia Treatment Centers (HTCs) all over the Philippines and provide free treatment for persons with hemophilia and bleeding disorders.
Sen. Nancy Binay is coauthor of the bill, while Sen. Joseph Victor “JV” Ejercito filed a similar measure, Senate Bill 1389, which sought a standard care for the treatment of persons with bleeding disorders.
Two counterpart bills, House Bill 5355 and House Bill 6986, authored by Rep. Alfred Vargas and Rep. Bernadette Herrera-Dy, respectively, are pending approval at the House of Representatives.
Sen. Joel Villanueva (Senate of the Philippines Facebook page / MANILA BULLETIN)
Hemophilia Advocates-Philippines (HAP) president Andrea Trinidad-Echavez said Senate Bill 1335, filed by Sen. Joel Villanueva, specifically seeks the creation of Hemophilia Treatment Centers in the Philippines to provide support for persons suffering the disease and related bleeding disorders.
“The more we share about hemophilia and related bleeding disorders, the more people become aware of their symptoms,” said Echavez, who herself has von Willebrand disease, a type of bleeding disorder.
“We hope that with increased awareness, those who are suffering in silence or may be misdiagnosed, will finally get help,” she added.
The World Federation of Hemophilia (WFH), a US-based humanitarian organization, has pegged the number of Filipinos with hemophilia at 10,000 and those with von Willebrand Disease at one million. Of the given number, only a dismal 1,500 persons with bleeding disorder have so far been registered.
Early this week, the group celebrated World Hemophilia Day, which was started by the WFH in 1989, at the Quezon City Circle and the municipal complex of Baliwag on Tuesday as part of the global campaign called “Light It Up Red” aimed at raising awareness on hemophilia and inherited bleeding disorders.
It was former President and now Pampanga Rep. Gloria Macapagal-Arroyo who signed Proclamation 1478 designating the month of April as National Hemophilia Awareness Month and April 17 as National Hemophilia Day.
Likewise, the Philippine hemophilia community held a one-day exhibit at the Glorietta Mall-Palm Drive Activity Center in Makati City on Sunday.
The event was co-organized by HAP and the Philippine Children’s Medical Center (PCMC). At least 2,000 people were estimated to have participated in the event, which included a medical and dental mission by Go Share, another nonprofit organization.
Dr. Eric Tayag, who represented Health Secretary Francisco Duque III, said the Department of Health will create a technical working group (TWG) that would formulate a national policy to address blood disorders such as hemophilia, thalasemmia, and aplastic anemia.
“Currently, there is no national integrated policy on the prevention, control and management of hemophilia and other bleeding disorders,” Tayag said.
“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,” he stressed.
Villanueva assured the hemophilia community that he would continue pushing for the passage of the measure.
Once passed into law, Villanueva said it would mandate the creation of Hemophilia Treatment Centers (HTCs) all over the Philippines and provide free treatment for persons with hemophilia and bleeding disorders.
Sen. Nancy Binay is coauthor of the bill, while Sen. Joseph Victor “JV” Ejercito filed a similar measure, Senate Bill 1389, which sought a standard care for the treatment of persons with bleeding disorders.
Two counterpart bills, House Bill 5355 and House Bill 6986, authored by Rep. Alfred Vargas and Rep. Bernadette Herrera-Dy, respectively, are pending approval at the House of Representatives.