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

TO:  PHILIPPINE LAWMAKERS

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

            INTRODUCED BY HONORABLE EDGARDO J. ANGARA

                                     EXPLANATORY NOTE

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. This Bill seeks to establish a system that will help ensure the early diagnosis and treatment of rare diseases in the Philippines.   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 pharmaceutical companies are unwilling to develop them under normal market conditions due to the inability to recover high cost of development and production . Certain diseases are serious, progressive, and life threatening.  These debilitating illnesses can greatly diminish patient quality of life and impose severe strain on their families.

The right of the person to be provided proper health care finds anchor in the 1987 Constitution.  In particular, Section 15 of Article 2, states that The State shall protect and promote the right to health of the people and instill health consciousness among them. Further, the United Nations Convention on the Rights of the Child, which the Philippines ratified on July 26, 1990, requires States Parties to recognize the right of the child to the enjoyment of the highest attainable standard of health (Art. 24[1]) and to ensure the provision of necessary medical assistance and health care to all children (Art. 24[2b])

This Bill provides for the creation of the Rare Disease Program at the Department of Health. The Rare Disease Program will ensure the provision of early and sustainable care for patients suffering from rare diseases, supervise the implementation of a research program on rare diseases, and coordinate current activities of the DOH to provide patients with rare diseases and their families with better access to adequate medical care, health information, and healthcare products to treat their conditions.  The bill will support public education and information campaigns on rare diseases, health professional training,. and establish a system to coordinate a research & development initiatives and resource generation efforts among relevant agencies of government and the private sector to improve the quality of life of patients with rare diseases and their families.  By stimulating research and development in rare diseases, this bill will also help grow Philippines life science capabilities and expertise which can serve as a foundation for future economic development and global competitiveness.

The rationale for creating the Rare Disease Program as part of the country's healthcare delivery system is stated in Section 11 of Article 13 of the Constitution:   The State shall adopt an integrated and comprehensive approach to health development which shall endeavor to make essential goods, health and other services available to all people at affordable cost. (emphasis supplied).

In recognition of our constitutional and international obligations to improve health of the people, immediate enactment of this bill is therefore requested.

Hence, we seek the early passage of this Bill.

Thanks to Dr. Carmencita D. Padilla, MD, MAHPS, director of the Institute of Human Genetics (IHG), National Institutes of Health (NIH), University of the Philippines (UP) Manila and chairman of the board of PSOD, and Atty. Jose Maria A. Ochave, board member of PSOD for the selfless effort paving way for the filing of SB 3087.

EVERYONE HAS THE RIGHT TO QUALITY LIFE!

TO:  PHILIPPINE LAWMAKERS

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

            INTRODUCED BY HONORABLE EDGARDO J. ANGARA

                                     EXPLANATORY NOTE

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. This Bill seeks to establish a system that will help ensure the early diagnosis and treatment of rare diseases in the Philippines.   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 pharmaceutical companies are unwilling to develop them under normal market conditions due to the inability to recover high cost of development and production . Certain diseases are serious, progressive, and life threatening.  These debilitating illnesses can greatly diminish patient quality of life and impose severe strain on their families.

The right of the person to be provided proper health care finds anchor in the 1987 Constitution.  In particular, Section 15 of Article 2, states that The State shall protect and promote the right to health of the people and instill health consciousness among them. Further, the United Nations Convention on the Rights of the Child, which the Philippines ratified on July 26, 1990, requires States Parties to recognize the right of the child to the enjoyment of the highest attainable standard of health (Art. 24[1]) and to ensure the provision of necessary medical assistance and health care to all children (Art. 24[2b])

This Bill provides for the creation of the Rare Disease Program at the Department of Health. The Rare Disease Program will ensure the provision of early and sustainable care for patients suffering from rare diseases, supervise the implementation of a research program on rare diseases, and coordinate current activities of the DOH to provide patients with rare diseases and their families with better access to adequate medical care, health information, and healthcare products to treat their conditions.  The bill will support public education and information campaigns on rare diseases, health professional training,. and establish a system to coordinate a research & development initiatives and resource generation efforts among relevant agencies of government and the private sector to improve the quality of life of patients with rare diseases and their families.  By stimulating research and development in rare diseases, this bill will also help grow Philippines life science capabilities and expertise which can serve as a foundation for future economic development and global competitiveness.

The rationale for creating the Rare Disease Program as part of the country's healthcare delivery system is stated in Section 11 of Article 13 of the Constitution:   The State shall adopt an integrated and comprehensive approach to health development which shall endeavor to make essential goods, health and other services available to all people at affordable cost. (emphasis supplied).

In recognition of our constitutional and international obligations to improve health of the people, immediate enactment of this bill is therefore requested.

Hence, we seek the early passage of this Bill.

Thanks to Dr. Carmencita D. Padilla, MD, MAHPS, director of the Institute of Human Genetics (IHG), National Institutes of Health (NIH), University of the Philippines (UP) Manila and chairman of the board of PSOD, and Atty. Jose Maria A. Ochave, board member of PSOD for the selfless effort paving way for the filing of SB 3087.

EVERYONE HAS THE RIGHT TO QUALITY LIFE!