MANILA-Aside from taking on the ice bucket challenge on Thursday and donating to a local rare diseases support group, Senator Sonny Angara has filed Rare Diseases Bill which aims to provide patients with rare diseases and their families better access to adequate medical care, health information, and healthcare products needed to treat their condition.
A rare disease, also known as orphan disorder, is any health condition resulting from genetic defects that rarely affect the general population. Rare diseases are often chronic, progressive, degenerative, and life-threatening.
The amyotrophic lateral sclerosis (ALS) became one of the most popular rare diseases worldwide today, thanks to the ice bucket challenge that aims to raise awareness and funds to help strike out ALS.
World Health Organization (WHO) data shows that there are 7,000 known rare diseases. 50 to 70 percent of which affect children while 30 percent of patients die before they reach the age of five.
According to the Philippine Society for Orphan Disorders (PSOD), the prevalence of rare diseases in the country is 1:20,000, with 227 patient families in the PSOD registry representing 48 rare disorders as of 2014.
Among the most common rare diseases in the Philippines are the maple syrup urine disease with 126 patients listed in PSOD, and the mucopolysaccharidoses II with 49 patients.
Since these diseases afflict only a small number of people, there is a lack of health practitioners who are experts in the field, and only a handful of companies manufacture medicines for rare diseases in the country.
There is also little government support for patients and research centers for orphan drug development in the Philippines.
"Such a situation makes treatment, often life-long, costly and far beyond the reach of most Filipino patients," Angara said.
"It should be national policy that the state endeavors toward universal healthcare, even for rare diseases," stressed the lawmaker, who is one of the authors of the Universal Healthcare Act of 2013.
Angara's Senate Bill No. 2383 aims to ensure that every patient diagnosed to have a rare disease has access to comprehensive medical care, including drugs and healthcare products, as well as timely health information to help them cope with their condition.
It also seeks to create and maintain a Rare Disease Registry that will contain data on rare diseases in the Philippines, patients afflicted with rare diseases, and orphan drugs and products.
"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 explained.
The proposed measure further seeks to mandate the Philippine Health Insurance Corporation (PhilHealth) to include the cost of treatment of rare diseases in the benefit package, and to direct provisions from the sin taxes collection to cover the cost of care for patients with rare diseases.
Senators Pia Cayetano, who lost her youngest son to complications from a rare congenital disease, and Cynthia Villar have also filed similar bills.
"Definitely, this ice bucket challenge craze would eventually die down. Looking forward, there is a need to integrate public educational and informational campaigns in the current programs of the Health Department to identify persons afflicted with rare disease and help the public understand the special needs of such persons," Angara said.
Aside from accepting the challenge and filing the bill, the senator will also donate US$100 a month for the next year to PSOD.
Angara was earlier nominated by Cebu Rep. Luigi Quisumbing, and in turn, he nominated Sen. Cayetano and Gilas Pilipinas Coach Chot Reyes to do the challenge.
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