Thursday, February 27, 2014
Sen. Cayetano Pushes Passage of Rare Disease Act
In the wake of reported mysterious flesh eating disease in Pangasinan which turned out to be a hoax, Sen. Pia Cayetano has sought the inclusion of persons afflicted with rare disease in the government's Universal Health Care program. The woman senator is pushing for the passage of Senate Bill No. 2098 or the "Rare Disease Act of 2014" which calls on the government to make sure that persons with rare disease would be given access to the medical treatment and drugs. She made the call as the country marks National Rare Disease Week which is commemorated every 4th week of February ahead of International Rare Disease Day on Feb. 28. SB 2098 tasks the Dept. of Health (DOH) to establish a National Rare Disease Registry which will include an inventory of rare disease in the country information on diagnosed patients and a list of certified medicines and medical devices. Citing the studies made by the Institute of Human Genetics based in the University of Philippines in Manila, she said that there are 41 rare disease affecting 300 diagnosed patients in the country. Among these are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome, Edward Syndrome and Patau Syndrome. Cayteno lamented that due to lack of research and facilities for rare ailments many more patients remain undiagnosed.
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