LET'S GIVE EVERY CHILD A CHANCE TO LIVE - ANGARA

Senator Edgardo J. Angara urged his colleagues to support Senate Bill 3087 or the Rare Disorder Act of the Philippines which seeks to provide patients with rare diseases better access to adequate medical healthcare.

"By providing adequate healthcare to Filipino children with rare disorders, we also give each and everyone a chance to live," stressed Angara, author of the measure and chair of Senate Committee on Science and Technology.

The measure is intended to promote greater awareness for rare or orphan disorders which afflict Filipino children across different socio-economic classes. It will establish an Office of Rare Disease in the Department of Health which will help ensure the early diagnosis and treatment of rare diseases among Filipino children.

Moreover, the bill also seeks to provide fiscal and regulatory incentives to developers, manufacturers, and importers of medicines, medical devices, diagnostic kits, and other pharmaceutical and nutritional products needed by patients suffering from rare diseases.

"Treatments for rare disorders are available but are expensive, often beyond the reach of families who have children afflicted with these diseases. I encourage the public to help in the advocacy for awareness and support for rare disorders," Angara said.

Rare disorders also known as "orphan diseases" are long-standing, life threatening, progressive and disabling which require multi-disciplinary care and afflicts babies in all social-economic classes. These include maple syrup urine disease, Gaucher disease, Prader Willi syndrome, Pompe disease, Galactosemia, Fabry disease and MPS I/II, among others.

In the Philippines, it is estimated that less than 1,000 individuals suffer from a rare disease. Many of these cases are due to genetic defects, with many patients exhibiting the symptoms during early childhood.

Drugs and healthcare products for these disorders have been called "orphan drugs" or "orphan products" because of minimal attention paid by pharmaceutical companies to them due to the high cost of production resulting from the absence of commercially significant demand. Thus, patients die during infancy or, if they manage to survive, suffer from chronic, debilitating illnesses that greatly diminish the quality of life, not to mention put severe strain on their families.