Experts push for passage of Rare Disease Act-A A +A
Wednesday, May 7, 2014
THE Philippine Society for Orphan Disorders (PSOD) on Wednesday called on legislators to put premium in the passage of Senate Bill 2098 or the Rare Disease Law of 2014 in order to address the needs of a minority but imperiled Filipinos.
In a press conference, PSOD President Cynthia Magdaraog said they are hoping that the bill filed by Senator Pia Cayetano last February would be passed as it would clearly help individuals that are suffering from so-called orphan diseases.
"We are continuously appealing to legislators for the enactment of the Rare Disease Act as it can really provide life-saving measures to our patients," said Magdaraog.
Under the proposed law, a comprehensive and sustainable health system for rare diseases shall be integrated into the existing public health care system as well as the creation of a Rare Disease Registry, which will contain data on patients and orphan drugs needed by afflicted patients.
Senate Bill 2098 similarly aims to include rare disease treatment in the health benefit package of the Philippine Health Insurance Corporation (PhilHealth).
Almost 5,000 Filipinos suffering from rare diseases are being eyed to immediately benefit from the said measure based on the PSOD data gathered from 1996 to 2014.
"In the Philippines, rare diseases affect one for every 20,000 Filipinos or about less than 5,000 of our 95 million population," said PSOD Board Member Dr. Sylvia Estrada.
She said there are about 7,000 known types of rare diseases with the Maple Syrup Urine Disease being the most common in the country with 126 cases, of which 40 remain alive and the other 86 having succumbing to their illness.
Other rare diseases found in the country are mucopolyssacharidosis (49); galactosemia (40); PKU and hyperphenylalaninemia (40); Methyl Malonic Acidemia (16); X-linked Adrenoleukodystrophy (15); and Gaucher (10).
Other rare diseases found among Filipinos are Urea Cycle Enzyme Defects; Pompe Disease; Fabry Disease; Glutaric Aciduria; Homocystinuira; Lowe Syndrome; Lesch Nyhan; Niemann Pcik; and Respiratory Chain Disorder.
Rare diseases or orphan diseases are defined as serious chronic illnesses that are often life-threatening, can be observed at birth or in early childhood, and are often genetically-caused.
The rare disease advocate explained how it is called "rare" since it only affects a small percentage of the population. (HDT/Sunnex)