Statement of the Problem

Brief Description
According to WHO, the goal of Universal Health Care is to ensure that all people obtain the
health services they need without suffering financial hardship when paying for them. The needs
of people suffering from orphan disorders, no matter how small a fraction of the population is
afflicted, is not to be overlooked by this Universal Health Coverage. Examining the different
needs of these patients, problems in the building blocks of health arise.
Particularly in the Philippine context, a comprehensive study on the leadership and governance,
health financing, health workforce, medical products and technologies, information and research,
and service delivery for persons with orphan disorders is needed to push for improvements and
equity in their health care, especially with the pending bill, the Rare Diseases Act of the
Philippines.

Nature of the Problem

Currently, the Philippines does not have government policies to support the needs of the minority
group of the orphan disorder patients. Provisions for medical financing is not readily available for
them, so there is no aid to relieve financial stresses that come with living with a disease. There is
also a pressing need to ensure that there is a well-informed and capable workforce to address the
needs of patients. Many of the services and technologies needed for diagnosis and treatment of
particular illnesses still need to be availed in other countries, making it inaccessible to many.

Current Solutions
In the Philippines, a bill proposed by Senator Edgardo C. Angara entitled the Rare Diseases Act
of the Philippines has been in current discussion. This bill aims to increase the benefits given to
persons afflicted with rare diseases such as access to treatments and an increased research on
these diseases. Furthermore, non-profit groups such as the Philippine Society for Orphan
Disorders have been supporting persons with rare diseases through their advocacies and programs
such as financial and medical support and raising awareness to this sector.

Significance

Expected Results
In providing a description of the health service delivery for the orphan disorders in the
Philippines, this research will be able to identify gaps in the current health system and propose
revisions or new programs to address the growing need for orphan disorder service and support

Why are we doing this? Purpose

To provide a description of the health service delivery, leadership and governance, information
and research, health financing, health workforce, medical products and technology of the six
building blocks of health for registered persons with orphan disorders in the Philippines.