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

House of Representatives FILE PHOTO

MANILA, Philippines — Seven years after the passage of the Rare Diseases Act, a group believes a long journey awaits before the law can be implemented in full force.

Universal Health Care (UHC) Watch Philippines co-convenor Alvin Manalansan on Thursday reignited the clamor for the government to take the reins in enforcing the law and organizing initiatives to help persons living with rare diseases (PLWRD).

“Although seven years have already passed, we still have a long way to go until all the provisions of the act are fulfilled,” he said in a statement.

READ: Rare, deadly diseases in PH get attention from barely enforced law 

Manalansan pointed out that the Philippine Congress only allocated funds to implement the law in 2022 and even slashed its budget from P104.9 million to P28.809 million in 2023.

“We want to discuss the possible reasons for this drastic cut,” he said.

Manalansan also noted that the UHC Watch, together with the Philippine Society of Orphan Disorders (PSOD) and the Stratbase ADR Institute, will hold a dialogue with stakeholders on Tuesday, March 21, to discuss the details of how the law is being implemented, how its initial budget was used and how implementers aim to “make do with and augment this year’s budget.”

The groups will likewise sound the call to provide adequate funding and implementation efforts to the Integrated Rare Diseases Management Program (IRDMP) Strategic Plan 2022 – 2026, intended to be the “first nationally coordinated effort to address rare diseases in the Philippines.”

The Rare Diseases Act, signed by then President Benigno Aquino III, was seen to improve the access of PLWRD to comprehensive medical care and timely health information that will help them understand and cope with their condition.

The law also seeks to provide regulatory and fiscal incentives to back research and development studies on rare diseases and facilitate the manufacture and importation of affordable drugs and products for rare or orphan diseases.

At least 65,000 Filipinos are diagnosed with rare diseases, according to the IRDMP. It then pointed out that a stack of challenges, including high cost and inaccessibility of medicine, confronts PLWRD.

The IRDMP also took note of other PLWRD burdens, such as lacking medical benefit packages for rare diseases,  low awareness of rare diseases for both healthcare practitioners and the public, and insufficient data to back policy and program planning and development for rare disease management.

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