Healthcare experts: Rare disease law fund remains ‘inadequate’

Rare, deadly diseases in the Philippines get attention from barely enforced laws. (Image design by Daniella Marie Agacer)

MANILA, Philippines — Healthcare stakeholders and advocates have lamented that the funding for implementing Republic Act 10747 or the Rare Disease Act remained “inadequate.”

The remark was made during a forum on Wednesday titled “Sustaining Gains and Balancing Priorities: Implementation of the Rare Disease Act,” organized by the Stratbase Group, Universal Healthcare Watch, and the Philippine Society of Orphan Disorders.

In his remarks, Stratbase President Professor Victor Andres “Dindo” Manhit acknowledged the huge discrepancy in the availability of treatments and resources due to the low occurrence and highly scattered 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,” Professor Manhit said.

The Rare Disease Act was passed in 2016 to help Filipino rare disease patients to receive the comprehensive medical care they need to survive.

According to a statement of advocates, the funding for this project has only been available in 2022 with a P104.9 million budget. Meanwhile, this year’s budget was reduced significantly to P28.8 million.

READ: Enforcement of law for Filipinos with rare disease, a long-drawn battle

Alvin Manalansan, a Universal Health Care Watch coordinator, said they are hoping for sufficient funding for the Rare Diseases Law that will sustain in the succeeding years.

“We look forward to a more inclusive and efficient budget planning for 2024 and beyond to ensure the sustainable implementation of the rare disease program,” he noted.

Meanwhile, the Director for Healthcare Policy of the Pharmaceutical and Healthcare Association of the Philippines, Lourdes Desiree Cembrano, highlighted that although rare diseases are certainly “individually rare”, they are still “collectively common.” – Meralyn Melitante, trainee

JMS/abc