By PRINCE GOLEZ
Manila Reporter
MANILA — Patients with rare diseases should be provided with an adequate level of health care, according to Sen. Sonny Angara.
Angara filed Senate Bill 2383, which directs PhilHealth to shoulder the cost of treatment of rare diseases.
“This will ensure the provision of early and sustainable care for patients suffering from rare disease and relevant research on rare diseases,” he said.
A report by the World Health Organization said there are about 7,000 rare diseases worldwide.
In the Philippines, the prevalence of rare diseases is 1:20,000, said the Philippine Society for Orphan Disorders.
Unfortunately, the country lacks health professionals who are experts in rare diseases, with only a handful of companies manufacturing drugs for such diseases, the senator from Aurora lamented.
Rare diseases “afflict a small number of people,” Angara said. “With such a small population, pharmaceutical companies find it difficult to achieve the economics of scale that justify any targeted research or mass production of orphan treatments or medicines.”
Angara filed the bill on Wednesday.
Senators Pia Cayetano and Cynthia Villar have filed similar measures, too.
Cayetano’s bill directs the Department of Health to establish a National Rare Disease Registry that will make available an inventory of rare diseases in the country.
Under Senate Bill 2098, the Health department will likewise provide information on diagnosed patients, as well as a list of certified medicines and medical devices./PN
