MANILA — Sen. Cynthia Villar on Wednesday pushed for the passage of her bill tapping collections from sin taxes to fund research and information initiatives for the treatment and management of rare diseases.
In Senate Bill 2279, Villar proposed to include in the sin tax collections provision which cover the cost of care for patients with rare diseases.
The bill also seeks to mandate the Philippine Health Insurance Corporation to include the cost of treatment of rare disease as part of its Catastrophic Illness Resource Fund.
“We need a law that will help provide patients with rare diseases, and their families, better access to adequate medical care, health information, and healthcare products needed to treat their condition,” Villar said.
“This will make available early and sustainable care for patients suffering from rare diseases, relevant researches on rare diseases, and integration of the health care activities for informational program on rare diseases for the general public and health care practitioners,” she added.
Villar said noted that in the Philippines alone, these rare diseases affect one in every 20,000 Filipino children.
”A “rare disease”, otherwise called an “orphan disorder”, is any health condition resulting from genetic defects that rarely affect the general population, which are often chronic, progressive, degenerative, and life-threatening,” she explained.
She added these diseases inflict a small number of individuals and treatment is usually life term and costly, making it beyond the reach of most Filipino patients. Furthermore, the quality of life of patients is often compromised by the Iack or loss of autonomy, high level of pain and suffering for the patient and their family.
Currently, Villar said there are about 6,000 to 8,000 identified rare diseases, and 75 percent of which affect children. Of this percentage, 30 percent of them die before they reach the age of five years.
Some of the rare diseases include as gaucher, maple syrup urine, pompe, galactosemia, phenylketonuria, methylmalonic academia, urea cycle defects, hurler syndrome, hunter syndrome and prader-willi syndrome.
The bill makes sure that every patient diagnosed to have a rare disease has access to timely health information and adequate medical care, including drugs and other healthcare products to treat or otherwise help them cope with their condition.
It will also provides regulatory and fiscal incentives to support research and development activities on rare diseases and the importation or manufacture of affordable orphan drugs or orphan products.
Once enacted into law, a financial incentive system will be institutionalized for agencies involved in clinical researches, patient care, medical information management, and other similar activities for the benefit of persons afflicted with a rare disease.