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MANILA, Philippines – People who have accepted the amyotrophic lateral sclerosis (ALS) ice bucket challenge can either take a quick ice-cold shower, donate money to an ALS association, or do both.
Senator Juan Edgardo “Sonny” Angara took it a step further by filing on Thursday, August 28, a bill that seeks to help patients with ALS and other rare diseases. (READ: ALS: The silent, slow killer)
Senate Bill 2383 or the Rare Diseases Bill seeks to provide comprehensive medical care to patients with rare diseases. This includes drugs, healthcare products, and health information.
The bill will also create a rare disease registry which will contain data on Filipinos with rare diseases, and available information on drugs and products for different rare diseases in the country.
“This data will be utilized in formulating policies, identifying program interventions and designing researches that will eventually address the needs of patients with rare disease,” Angara said in a statement Thursday.
The World Health Organization defines a rare disease as an often-debilitating disease or condition with a prevalence rate of 0.65% to 1%.
Data from the UN agency showed there are 7,000 known rare diseases in the world, with 50% to 70% affecting children. About 30% of the patients die before they turn 5 years old.
Rare diseases in the Philippines
In the Philippines, a disease is considered rare when it affects one patient in every 20,000-population. (READ: A fighting chance for patients with rare diseases)
“It should be national policy that the state endeavors toward universal healthcare, even for rare diseases,” stressed Angara, who is one of the authors of the Universal Healthcare Act of 2013.
Angara is not the first lawmaker to file a bill concerning patients with rare diseases. At least 8 others have filed measures that advocates hope will be consolidated and enacted during the 16th Congress.
Angara’s bill also mandates PhilHealth to include the treatment cost for rare diseases in a benefit package. Aside from that, collections from sin taxes must also cover the cost of care for patients.
The senator, who took on the ALS ice bucket challenge after Cebu Representative Luigi Quisumbing’s nomination, also pledged to donate $100 every month for the next year to the Philippine Society for Orphan Disorders (PSOD).
PSOD is an advocacy group that coordinates efforts for patients with rare diseases in the country. (READ: FAST FACTS: ALS and the ice bucket challenge)
As of 2014, PSOD’s registry of 227 patient families already represent 48 rare diseases. In the country, the most common diseases are maple syrup urine disease and mucopolysaccharidoses.
Even if the “ice bucket challenge craze would eventually die down,” Angara urged the health department to integrate the campaign for patients with rare diseases into its current programs.
Angara nominated Senator Pia Cayetano and Gilas Pilipinas Coach Chot Reyes to do the ALS ice bucket challenge. – Rappler.com