The Rare Disease Act of 2016 (Republic Act No.10747) is a comprehensive policy that addresses the needs of persons with rare diseases (RDs) through the implementation of early interventions to increase their survival rate.

In 2022, legislators of both Houses of Congress successfully included an allocation in the same year’s General Appropriations Act (GAA).  Funding of Php104.9 million was lodged in the University of the Philippines – National Institutes of Health (UP-NIH). It was the first time that the Law was funded, specifically for its implementation, since it was enacted in 2016.

On 27 January 2022, the Stratbase ADR Institute, in partnership with the Philippine Society of Orphan Disorders (PSOD) and Universal Healthcare (UHC) Watch, started a virtual townhall discussion (vTHD) entitled, “No One Should be Left Behind Amid the Continuing Pandemic: Facilitating the Implementation of the Rare Disease Law for 2022”, which gathered relevant stakeholders to discuss the support needed to facilitate the utilization of the allocated budget intended for the implementation of the Act. On 15 August 2022, another discussion was held as a follow-up discussion and provided updates amidst the ongoing pandemic. It has also provided a venue to discuss with stakeholders the objectives and expansion of the rare diseases list in the newly released Integrated Rare Diseases Management Program Strategic Plan (IRDMSP) 2022-2026.

Based on the 2023 GAA, UP-NIH received an amount of PHP 28.809 million for the implementation of the Law, a significant reduction from the previous year’s allocation. Thus, stakeholders are pursuing a dialogue with the key implementers to provide updates aligned with the implementation of the Law and the objectives of the IRDMSP, as well as understand the plans in utilizing the current year’s allocation.

In line with the celebration of Rare Disease Week and the 7^th year celebration of the signing of the Rare Disease Act of 2016, the Stratbase ADR Institute, in partnership with PSOD and UHCWatch, organized another dialogue entitled, “Sustaining Gains and Balancing Priorities: Implementation of Rare Disease Act for 2023”, to continue the discussion on plans that will benefit the RD patients.

The discussion aimed to provide a venue for key decision makers and stakeholders to continue the previous discussions that will further institutionalize the government’s support to rare disease patients, which is aligned with the implementation of the Rare Disease Law and in accordance with the achievement of the objectives of the IRDMSP 2022-2026.

Program

Opening Remarks
Prof. Victor Andres “Dindo” Manhit
President, Stratbase ADR Institute

Keynote Address: A Look Back at 2022: What was achieved and what were the challenges in implementing the rare disease act?
Dr. Carmencita Padilla
Chancellor, University of the Philippines Manila;
Founding Chairman, Philippine Society of Orphan Diseases

Speakers

Continuing Rare Diseases Discussion and Proposed Programs for 2023
Dir. Eva Maria Cutiongco-dela Paz
Executive Director, National Institutes of Health

Updates on the implementation and Future Directions of the Integrated Rare Disease Program Management Strategic Plan 2022-2026
Dr. Manuel Vallesteros
Division Chief, Disease Prevention and Control Bureau-Child, Adolescent and Maternal Health, Department of Health

Learnings and Opportunities for Improvement in Providing Diagnostic Services and Holistic Therapy to Improve Rare Disease Patient Outcomes
Dr. Celeste Mae Campomanes
Former President, Philippine College of Chest Physicians

Encouraging Private Sector Engagement: Support of the pharmaceutical industry to complement and augment the initiatives of the public health sector in improving access to innovative therapies
Ms. Lourdes Desiree Cembrano
Director for Healthcare Policy, Pharmaceutical and Healthcare Association of the Philippines (PHAP)

HTA Council’s Updates on the Assessment Process for Rare Disease Technologies
Dr. Marita Tolentino-Reyes
Chairperson, HTA Council

Reactors

Ms. Cynthia Magdaraog
President, Philippine Society for Orphan Disorders (PSOD)

Ms. Amanda Bonife-Kiamko
Founder and President, Scoliosis Philippines Support Group, Inc.

Manifesto of Support: Responsibly Carrying Out My Roles to Support the Rare Disease Act Implementation

• Rare Disease Patients
• Government (DOH, UP-NIH)
• Medical Societies
• Private Sector

Closing Remarks
Mr. Alvin Manalansan
Healthcare and Education Convenor, CitizenWatch Philippines;
Co-Convenor, UHCWatch;
Non-Resident Fellow, Stratbase ADR Institute