PLEASE ENDORSE SB 3087, THE RARE DISEASES ACT OF THE PHILIPPINES!

PLEASE ENDORSE SB 3087, THE RARE DISEASES ACT OF THE PHILIPPINES!

Senator Edgardo Angara filed Senate Bill No. 3087, entitled the Rare Diseases Act of the Philippines. It is the policy of the State to protect and promote the right to health of the people, including the right of persons suffering from rare diseases to have access to timely health information and adequate medical care.

This bill seeks to establish 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. 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. The bill also 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.

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic effects 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. In the Philippines, it is estimated that less than 1000 individuals suffer from a rare disease. Many of these cases are due to genetic defects, with many patients exhibiting the symptoms during early childhood. Unfortunately, there is minimal interest among research institutions in learning more about these diseases because they affect only a small segment of the population. Moreover, 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. Thus, patients die during infancy of, 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.

This Bill will help provide patients with rare diseases better access to adequate medical care, health information, and healthcare products needed to treat their condition. It establishes a system to coordinate a sustainable research & development initiatives and resource generation efforts among relevant agencies of government and the private sector toward improving the quality of life of patients with rare diseases and their families.

Thanks to Dr. Carmencita D. Padilla, MD, MAHPS, director of the Institute of Human Genetics (IHG) a service and research oriented institute within the National Institutes of Health (NIH), University of the Philippines (UP) Manila for the selfless effort paving way for the filing of SB 3087.