Let’s give every child a chance to live

Former Sen. Edgardo J. Angara

Column-Sen Edgardo Angara photo

Not too many people are aware of a life-threatening condition that affects a small percentage of individuals, mostly children in all social economic classes. This rare condition is mostly common known as the “orphan disorder” because the patients suffering from it are considered orphaned by the society.

In the Philippines, there are more than 200 patients suffering from orphan disorder, a disease caused by genetic defects and environmental exposure during pregnancy or later in life. The Philippine Society for Orphan Disorders (PSOD) coined the term “orphan disorders” because those who have rare diseases do not get adequate support from the state due to the high cost of treatment and lack of medical practitioners specializing in these diseases.

Meanwhile, the medication and other products used to treat this kind of disease have been labeled “orphan drugs” or “orphan products” because some pharmaceutical companies do not place importance in these drugs given the high cost of production and little demand. As a result, patients usually die at an early age or during infancy, and if they manage to survive, they would suffer from debilitating illnesses that significantly diminish their “quality of life”.

Seeing the need for a legislation that will push the state to provide adequate support for patients suffering from orphan disorders, I authored Senate Bill 3087 or the Rare Disorder Act of the Philippines – which seeks to provide patients (of rare diseases) with a better access to adequate medical healthcare.

The measure is intended to promote greater awareness for rare or orphan disorders, which afflict Filipino children across different socioeconomic classes. It also seeks to 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 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.

With the help of the Institute of Human Genetics (IHG) of the University of the Philippines’ National Institute of Health, its partner organizations and pharmaceutical companies, more practitioners, are becoming aware of this life-standing disease through information campaign and advocacies.

By providing adequate healthcare to Filipino children with rare disorders, we also give each and everyone a chance to live.

Email: angara.ed@gmail.com
Website: www.edangara.com

VitalSigns Issue 59 Vol. 3, January 1-31, 2014