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Angara does ice bucket challenge, files bill for coverage on rare diseases

By: - Reporter / @MAgerINQ
/ 04:15 PM August 28, 2014

Video from YouTube/Sonny Angara

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MANILA, Philippines – Senator Sonny Angrara did the ice bucket challenge not once, but twice on Thursday under the rain at the rooftop of the GSIS building in Pasay City.

Some employees of the Senate took time to go out of their offices to witness the senator take the challenge a little past 2 p.m.

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His staff members had already dumped onto him a pail of ice-cold water when members of the media came to cover him. With a little prodding, Angara gave in to the media’s request to repeat the challenge so they could witness it.

Angara nominated his colleague, Senator Pia Cayetano and Gilas coach Chot Reyes, to also do the ice bucket challenge.

Aside from taking on the challenge, Angara has also filed the Rare Diseases Bill, which seeks to provide patients with rare diseases, including the amyotrophic lateral sclerosis or ALS, and their families better access to adequate medical care, health information, and healthcare products needed to treat their condition.

A rare disease, also known as orphan disorder, is any health condition resulting from genetic defects that rarely affect the general population. Rare diseases are often chronic, progressive, degenerative, and life-threatening, said a statement from the senator’s office.

The ALS has become one of the most popular rare diseases worldwide today because of the ice bucket challenge that aims to raise awareness and funds to help strike out ALS.

Based on the World Health Organization (WHO) data, Angara said, there are 7,000 known rare diseases, 50 to 70 percent of which affect children while 30 percent of patients die before they reach the age of five.

According to the Philippine Society for Orphan Disorders (PSOD), the prevalence of rare diseases in the country is 1:20,000, with 227 patient families in the PSOD registry representing 48 rare disorders as of 2014.

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Among the most common rare diseases in the Philippines are the maple syrup urine disease with 126 patients listed in PSOD, and the mucopolysaccharidoses II with 49 patients.

Since these diseases afflict only a small number of people, Angara said, there is a lack of health practitioners who are experts in the field, and only a handful of companies manufacture medicines for rare diseases in the country.

He said there is also little government support for patients and research centers for orphan drug development in the Philippines.

“Such a situation makes treatment, often life-long, costly and far beyond the reach of most Filipino patients,” said the senator.

“It should be national policy that the state endeavors toward universal healthcare, even for rare diseases.”

Angara’ said his proposed measure aims to ensure that every patient diagnosed to have a rare disease has access to comprehensive medical care, including drugs and healthcare products, as well as timely health information to help them cope with their condition.

His bill also seeks to create and maintain a Rare Disease Registry that will contain data on rare diseases in the Philippines, patients afflicted with rare diseases, and orphan drugs and products.

“This data will be utilized in formulating policies, identifying program interventions and designing researches that will eventually address the needs of patients with rare disease,” he said.

Senator Juan Edgardo “Sonny” Angara. INQUIRER.net FILE PHOTO

The proposed measure further seeks to mandate the Philippine Health Insurance Corporation (PhilHealth) to include the cost of treatment of rare diseases in the benefit package, and to direct provisions from the sin taxes collection to cover the cost of care for patients with rare diseases.

Senators Cayetano, who lost her youngest son to complications from a rare congenital disease, and Cynthia Villar have also filed similar bills.

“Definitely, this ice bucket challenge craze would eventually die down. Looking forward, there is a need to integrate public educational and informational campaigns in the current programs of the Health Department to identify persons afflicted with rare disease and help the public understand the special needs of such persons,” Angara said.

Aside from accepting the challenge and filing the bill, the senator said he will also donate US$100 a month for the next year to PSOD.

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TAGS: ice bucket challenge, Legislation, rare diseases, Senate, Sonny Angara
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