Last Monday December 14, the Senate approved a bill to include the treatment of rare diseases in the health benefit package of the Philippine Health Insurance Corporation (PhilHealth).
According to Interaksyon, Senator Pia Cayetano, sponsor of the bill, said, “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. For those who are directly affected by this condition, this measure will relieve some of the economic burden of managing rare diseases.”
She also stressed the need for a more comprehensive and sustainable way to deliver health care to Filipinos afflicted with rare diseases, which this new PhilHealth benefit addresses.
Rare disease, or ‘orphan disorder’, is a health condition caused by genetic defects which can be apparent at birth or reveal themselves only later on in life. It affects only a small percentage of a country’s general population.
In the Philippines, a disease or disorder is considered rare when it affects one in 20,000 individuals or less, says PhilHealth.
Other benefits of the bill
Aside from delivering a more efficient health care package for those with rare diseases, the bill will also pave the way for more government-backed research and development on rare diseases. Also, on the manufacture of ‘orphan drugs’ used to treat them.
According to Senator Cayetano, out of 7,000 to 8,000 known rare diseases but only 400 of them have approved treatment. About 75 percent of these rare diseases affect children.
According to the Philippine Registry of Rare Diseases at the Institute of Human Genetics, there are 41 diseases affecting 300 diagnosed patients in the Philippines while many others 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.
Once the bill is enacted officially into law, she said that we Filipinos could hope for a better quality of life for the ones we love.
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