Support patients with rare diseases, government urged

MANILA, Philippines — A group advocating for the welfare of persons with rare illnesses has urged the government to implement Republic Act 10747 or the Rare Disease Law amid the disruptions brought by the COVID-19 pandemic.

Dindo Manhit, president of Stratbase Albert del Rosario Institute, said the government and health sector could adopt measures to address the six-year delay in the implementation and funding of the Rare Disease Law.

Stratbase recently held an online forum titled “No one should be left behind amid the pandemic” in partnership with the Universal Health Care (UHC) Watch and Philippine Society for Orphan Disorders.

The groups asked the government to help patients with rare diseases by allocating funding for treatment programs in the General Appropriations Act (GAA).

“Our healthcare coverage should be expanded to respond to the rising medical needs of the public,” Manhit said.

Alvin Manalansan, co-convenor of UHC Watch, said funding programs in the national budget for persons with rare diseases is key to obtaining tangible results.

“We should expand the coverage of the UHC Law so that more types of diseases can be covered, and more patients will get access to services such as diagnosis and treatment,” Manalansan said.

Among the rare illnesses are pompe, gaucher, maple syrup urine and fabry diseases.

At least 6,500 patients or one in every 20,000 Filipinos are afflicted with rare diseases, based on statistics from the University of the Philippines National Institutes of Health (UP-NIH).

Most of the patients belong to the lower socio-economic group and rely on support from the government, according to Stratbase.

RA 10747 or the Rare Disease Act was passed in March 2016 to help address the needs of persons with rare diseases through early intervention. It was only this year that a funding of P104.9 million was allocated in the GAA as an item in the UP-NIH budget.