Seven years after the passage of a law meant to help Filipinos with rare —sometimes called orphan – diseases, implementation and funding remain inadequate, and only a holistic approach will ensure that patients can get help for early detection and treatment.
Healthcare stakeholders and advocates arrived at this consensus during a recent forum, titled “Sustaining Gains and Balancing Priorities: Implementation of the Rare Disease Act,” jointly organized by the Stratbase Group, Universal Healthcare Watch, and the Philippine Society of Orphan Disorders.
Stratbase president Prof. Victor Andres Manhit, in his opening remarks, acknowledged the “evident disproportion in the availability of treatments and resources due to the low prevalence and the widely dispersed distribution of patients with rare diseases.”
“It has been seven years after the passage of a law advancing the interests of persons afflicted with rare diseases, and yet patients and other stakeholder groups are still clamoring for government support in terms of adequate funding and proper implementation of the Integrated Rare Diseases Management Program Strategic Plan,” Manhit said.
Republic Act 10747 or the Rare Disease Act was passed in 2016 to provide Filipino rare disease patients access to comprehensive medical care. Specifically, it seeks to address the needs of patients through early intervention to increase their survival rate.
But funding was only made available in 2022, with P104.9 million in the General Appropriations Act, earmarked for the University of the Philippines – National Institutes of Health.
Worse, this year, budget allocation was significantly reduced to P28.8 million.
Alvin Manalansan, convenor of Universal Health Care (UHC) Watch, said that while substantial gains have been made in achieving universal health care, a lot more needs to be done to achieve the spirit and ideal of the RD Law.