We thank everyone who participated in the virtual round table discussion (vRTD) 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 who specifically discussed the support needed to facilitate the utilization of the allocation based on the 2022 General Appropriations Act for the implementation of the Rare Diseases Act.

We would like to express our deepest appreciation to our speakers and reactors, Dr. Carmencita D. Padilla (Chancellor, University of the Philippines Manila), Dir. Eva Maria C. Cutiongco-dela Paz (Executive Director, National Institutes of Health), Dr. Cherylle Gavino, MPM-HSD (OIC Director III, Technical Integration, Disease Prevention and Control Bureau/Health Promotion Bureau, Department of Health), Mr. Victor Madaraog (Representative, Philippine Society for Orphan Disorders), Ms. Daisy Cembrano (Director for Healthcare Policy, Pharmaceutical and Healthcare Association of the Philippines), Mr. Anand Jha (Founder and Managing Director, ANSEA), Ms. Merla Rose Reyes (Product Team Lead for Special Benefits, Benefits Development and Research Department, PhilHealth), Ms. Bernardita Chua (Division Chief, Budget and Management Bureau (F) Department of Budget and Management), and Dr. Lizette Kristine Lopez (Chair, Subcommittee on Drugs, Health Technology Assessment Council) for sharing their incredibly valuable knowledge and insights.

This event with esteemed experts was a chance to share different perspectives and solutions that can foster holistic discussions and approaches to facilitate the implementation of the Rare Diseases Act amid the ongoing challenges of the COVID-19 pandemic.

PROGRAM

Introduction

Mr. Francesco “Paco” A. Pangalangan Executive Director, Stratbase ADR Institute

Opening Remarks

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

Vision and Objective
[The Rare Diseases Act and the Path Towards Achieving its Overall Vision]

Dr. Carmencita D. Padilla
Chancellor, University of the Philippines Manila
Founding Chairman, Philippine Society of Orphan Diseases

[Plans and Targets in the Implementation of the Republic Act No. 10747 (Rare Diseases Act) for 2022, and for the Succeeding Years]

Dir. Eva Maria C. Cutiongco-dela Paz
Executive Director, National Institutes of Health

[Updates on Rare Disease Program Management, Medicine Access Program, and the Patient Navigation Program Amid the Continuing Pandemic]

Dr. Cherylle Gavino, MPM-HSD
OIC Director III, Technical Integration
Disease Prevention and Control Bureau/ Health Promotion Bureau, Department of Health

[Implementation of Rare Diseases Act – Patient Expectations/ Perspectives]

Mr. Victor L. Magdaraog
Father of Juan Magdaraog
Philippine Society for Orphan Disorders

[Access to Innovative Therapies for Rare Diseases – Pharmaceutical Industry Perspective]

Ms Daisy Cembrano
Director for Healthcare Policy
Pharmaceutical and Healthcare Association of the Philippines

[Importance of Stakeholders Engagements & Collaboration in Driving Better Access to Treatment for Rare Disease Patients]

Mr. Anand Jha
Founder and Managing Director
Ansea Consultants Pte Ltd (Singapore)

[PhilHealth’s Outlook on Benefit Packages Intended for Rare Diseases Patients]

Ms. Merla Rose Reyes
Product Team Lead for Special Benefits
Benefits Development and Research Department
PhilHealth

[Updates on Operations and Applicable Guidelines in the Utilization of the Annual Budget Allocation of the University of the Philippines – National Institutes of Health]

Ms. Bernardita Chua
Division Chief
Budget and Management Bureau (F)
Department of Budget and Management

[The Role of Health Technology Assessment in Delivering

Innovative Treatments to Rare Diseases Patients]

Dr. Lizette Kristine Lopez
Chair, Subcommittee on Drugs
Health Technology Assessment Council

CLOSING REMARKS

Mr. Alvin Manalansan
Healthcare and Education Convenor
CitizenWatch Philippines/
Co-Convenor, UHCWatch