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Senator pushes accessible aid for Filipinos with ‘Royal Disease’

Posted On 2014 Aug 16
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Philippine Senator Grace Poe flanked by Kalayaan 2014 Asst. Secretary Mary Ann Omega (LA Fil-Am Chamber) and President Emeritus of the Filipino-American Chamber of Commerce of Los Angeles and past Kalayaan Chair (2008) and Chairman of the National Federation of Filipino American Associations (NaFFAA Region 9) Noel S. V. Omega during the senator's arrival at Los Angeles International Airport (LAX). Poe was the guest of honor and keynote speaker at the Kalayaan 2014 Grand Ball last Saturday, June 14.

Philippine Senator Grace Poe flanked by Kalayaan 2014 Asst. Secretary Mary Ann Omega (LA Fil-Am Chamber) and President Emeritus of the Filipino-American Chamber of Commerce of Los Angeles and past Kalayaan Chair (2008) and Chairman of the National Federation of Filipino American Associations (NaFFAA Region 9) Noel S. V. Omega during the senator’s arrival at Los Angeles International Airport (LAX). Poe was the guest of honor and keynote speaker at the Kalayaan 2014 Grand Ball last Saturday, June 14.

MANILA (Mabuhay) — Senator Grace Poe filed on Wednesday a bill that seeks to aid indigent Filipinos who have Hemophilia and other bleeding disorders.

Poe’s Senate Bill 2343 or “An Act to assist Persons with Hemophilia and other disorders” intends to establish four treatment centers in state-owned hospitals — one in the Philippine General Hospital (PGH) for Metro Manila, and one each for Luzon, the Visayas and Mindanao.

According to Poe, the amount of one hundred million pesos shall be appropriated after the enactment of the said bill for this purpose.

Hemophilia or known as the “Royal Disease” is historically identified as an illness that struck the Royal families in the west during the 19th and 20th century. It is a group of rare and inherited bleeding disorders where the patient’s blood lacks the ability to clot normally. Bleeding of internal organs and joints for unknown reasons are results of the said disease.

Today, it can still be called as the “Royal Disease” because of the cost it takes for a specific treatment.

A single treatment for a mild bleed can cost between 15,000 to 50,000 pesos while complete treatment could have a hefty price.

According to the Hemophilia Association of the Philippines for Love and Service (HAPLOS), around 10,000 Filipinos are afflicted with this rare disorder.

Although effective methods to treat patients with Hemophilia and other bleeding disorders are available in the country, 95 percent of the patients who are poor cannot afford a session treatment.

“With proper treatment and care, persons with Hemophilia and other bleeding disorders need not suffer much.” Poe said.

Poe proposed a creation of small council that will continue on studying and conducting research for various treatments, detection, and approaches to deal with the rare disease.

The council, according to Poe, is composed of a representative from the Department of Health (DOH), medical practitioner or a representative from the academe that specializes in Hemophila and bleeding disorders, and one representative from an organization of patients or people suffering from Hemophilia and other bleeding disorders.

“This is an extremely difficult and trying condition and we must enable our afflicted countrymen to receive due treatment and care,” Poe said. (MNS)

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