Press Release
May 7, 2009

ANGARA BATS FOR GOV'T ATTENTION FOR FILIPINOS
WITH RARE DISEASES

Seeks State welfare by establishing Office of Rare Diseases

Senator Edgardo J. Angara today said that the State should institutionalize its concern for the marginalized and often discriminated Filipinos who were afflicted with rare diseases by creating an Office of Rare Diseases in the Department of Health.

"Government help and attention must be provided to Filipino patients who were afflicted with rare diseases in order for them to have better access to adequate medical care, health information, and healthcare products needed to treat their condition. Establishing a system to coordinate a sustainable research & development initiatives and resource generation efforts among relevant agencies of government and the private sector will boost our efforts toward improving the quality of life of patients with rare diseases and their families," said Angara who chairs the Senate Committee on Science and Technology.

He added, "The protection and promotion of the Filipinos' right to health which includes the right of persons suffering from rare diseases to have access to timely health information, is mandated and guaranteed by the Constitution. Lack of interest, however, drives a portion of our population who are suffering from rare diseases to isolation. Worse, these patients die during infancy or if they manage to survive, suffer from chronic, debilitating illnesses that greatly diminish their quality of life, not to mention impose severe strain on their families."

According to Angara, it is estimated that less than 1000 Filipinos suffer from rare diseases and many of these cases are due to genetic defects, with many patients exhibiting the symptoms during early childhood.

A "rare disease" otherwise called an "orphan disorder" is any health condition resulting from genetic defects that afflict no more than 1 of every 20.000 individuals in the country. Examples are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease. Galactosemia, Phynelketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome and the so-called Lubag, which is found only in the island of Panay.

Angara, principal author of the PhilHealth Act, recently filed a bill which seeks to create a system that will help ensure the early diagnosis and treatment of rare diseases in the Philippines through the establishment of an Office of Rare Disease in the Department of Health.

He said that the Office of Rare Disease will supervise the implementation of a research program on rare diseases, ensure the provision of early and sustainable care for patients suffering from rare diseases, and conduct public educational and information campaigns on rare diseases.

SB 3087 seeks to provide fiscal and regulatory incentives to developers, manufacturers, and importers of medicines, medical devices, diagnostic kits, and other pharmaceutical and nutritional products needed by patients suffering from rare diseases.

Angara laments that there is minimal interest among research institutions in learning more about rare diseases because they affect only a small segment of the population. He said, moreover, that drugs and healthcare products for these disorders have been called "orphan drugs" or "orphan products" because of minimal attention paid by pharmaceutical companies to them due to the high cost of production resulting from the absence of commercially significant demand.

"Even Filipinos with rare diseases deserve greater quality of life, and its time for the State to shore up its resources in order to address their needs. It is but fitting for us to ensure that every Filipino patient diagnosed to have a rare disease has access to timely health information and adequate medical care," added Angara.

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