MANILA, Philippines – Senator Sonny Angara has lauded the signing of the Rare Diseases Act which provides patients with rare diseases and their families improved access to comprehensive medical care, health information, and healthcare products needed to treat their condition.
“This new law expands the government’s universal healthcare program to cover patients with rare disorders. I thank our good President and our colleagues, especially to the sponsor Sen. Pia Cayetano, for the passage of this much-needed measure,” said Angara, one of the authors of Republic Act 10747 or the Rare Diseases Act.
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.
World Health Organization (WHO) data shows that there are 7,000 known rare diseases which mostly affect children.
In the Philippines, a disease or disorder is considered rare if it affects one in 20,000 individuals, as defined by the Institute of Human Genetics of the National Institutes of Health, University of the Philippines Manila.
The maple syrup urine disease, mucopolysaccharidoses II, and the Hunter syndrome are among the most common rare diseases in the Philippines.
“Since these diseases afflict only a small number of people, there is a glaring lack of health practitioners who are experts in the field. There were even cases of incorrect diagnosis. Such a situation makes treatment, often life-long, costly and far beyond the reach of most Filipino patients,” the senator said.
The Rare Diseases Act mandates 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.
Under RA 10747, patients with rare disease will also be considered as persons with disabilities and will be granted benefits and privileges such as priority programs and discounts as mandated by the Magna Carta for Disabled Persons.
In addition, it 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,” the lawmaker explained.
The new law also provides regulatory and fiscal incentives to support research and development studies on rare diseases and to facilitate the manufacture and importation of affordable orphan drugs and products.
“We are hopeful that the passage of the Rare Diseases Act will lead to better treatment and prevention for these types of diseases,” Angara said.
Angara lauds signing of Rare Diseases Act
