MARCH 27, 2014

NR # 3418

Creation of a national health care system for “rare diseases” sought
A lawmaker is seeking the creation of a comprehensive and sustainable health system for rare diseases to provide patients with better access to adequate medical care and treatment, health information and healthcare products. Rep. Gus Tambunting ( nd !istrict, "ara#aque $ity% has filed &ouse 'ill ()) , which establishes a system to coordinate a sustainable research and development initiatives and resource generation efforts among relevant agencies of government and private sector toward improving the quality of life of patients with rare diseases and their families. Tambunting said a rare disease or orphan disorder is a health condition resulting from genetic defects that affect the general population. Tambunting said there are *,)))+,,))) rare diseases, ma-ority are genetic in origin and manifest at birth or early in childhood. Gaucher Disease, Maple Drug Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome and Prader- illi Syndrome are classified as rare diseases under the measure. .Rare diseases are often chronic, progressive, degenerative and life+threatening. The quality of life of patients is often compromised by the lack or loss of autonomy, high level of pain and suffering for the patient and their family. Although these diseases inflict a small number of individuals, treatment is usually life term and costly, making it beyond the reach of most /ilipino patients,0 Tambunting stressed. 1nder the measure to be known as the .Rare !iseases Act of the "hilippines,0 the !epartment of &ealth (!2&% is designated to convene the Rare !iseases Technical 3orking Group (R!T3G%, which is tasked to designate diseases that are classified as .rare diseases,0 designate orphan drugs and products corresponding to the rare diseases and formulate policies that shall regulate the approval and certification of orphan drugs and products. All patients diagnosed with a rare disease shall be included in a national database for rare disease case registries. &ealth practitioners and health institutions shall inform patients afflicted with rare diseases of relevant orphan drugs and orphan products in the Rare !isease Registry. The bill integrates the public educational and informational campaigns in the current programs of the !2& to identify persons afflicted with rare disease and help the public understand the special needs of such persons. The measure likewise seeks to provide regulatory and fiscal incentives to support research and development activities on rare diseases and the import or manufacture of affordable orphan drugs or orphan products. /urthermore, the bill aims to institutionali4e a financial incentive system for agencies involved in clinical researches, patient care, medical information management and other similar activities for the benefit of persons afflicted with a rare disease. (5)% lvc

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