14 December 2015
By Senate PRIB
Senate passes the Rare Disease Bill
The Senate today approved on third and final reading a bill that seeks to include the treatment of rare diseases in the health benefit package of the Philippine Health Insurance Corporation.
Sen. Pia Cayetano, sponsor of Senate Bill No. 2990 or the Rare Disease Act, said the measure also seeks the inclusion of medical assistance to persons with rare disease as provided by Republic Act 10351 or the Sin Tax Reform Law.
“It is time we include the rare disease sector in our public health policy because health is a human right and universal health care means that nobody is left behind,” Cayetano said.
“For those who are directly affected by this condition, this measure will relieve some of the economic burden of managing rare diseases,” she added.
Senate President Franklin M. Drilon, author of the Sin Tax Reform Law, said that the new measure will complement the objectives of RA 10351, noting the highly successful implementation of the reform act.
“It is only proper to use a portion of the collections from the Sin Tax Reform Law to extend greater assistance to Filipinos who need help the most, like those suffering from rare diseases,” Drilon stressed.
Cayetano also said there is a need to establish a comprehensive and sustainable health delivery system to help Filipinos afflicted with rare diseases.
She said the bill would also lay the groundwork for government support in research and development of rare diseases as well as the import and manufacture of orphan drugs and products.
Rare disease, also known as orphan disorder, is a health condition resulting from genetic defects. It affects only a small percentage of the general population. According to Cayetano, there are between 7,000 to 8,000 known rare diseases but only 400 of them have approved treatment. About 75 percent of rare diseases affect children.
Statistics from the Philippine Registry of Rare Diseases at the Institute of Human Genetics show that there are 41 diseases affecting 300 diagnosed patients in the Philippines while the many more remain undiagnosed.
“As we currently stand, the Philippines has yet to include the rare disease sector in mainstream public health programs despite studies suggesting that 11.2 percent of child mortality in the Philippines are caused by child defect and congenital anomalies attributed to rare diseases,” Cayetano said.
She said Filipinos could hope for better quality of life for the ones they love who suffer from rare diseases once the bill is enacted into law.
The bill was introduced by Senators Miriam Defensor Santiago, Cayetano, Loren Legarda, Cynthia Villar, Juan Edgardo “Sonny” Angara, Manuel “Lito” Lapid, Grace Poe and Teofisto “TG” Guingona III.
The House of Representatives has also approved its version of the measure, HB No. 5973, on third and final reading.#
FILE PHOTO Senator Pia Cayetano with twins Peter John and John Paul Parco, 17, and their younger brother Vicente, 16. The Parco brothers have a rare genetic disorder called Hunter Syndrome. (11 September 2014)