- Senator Teofisto Guingona IIIChairman, Senate Health Committee
- Congressman Eufranio EriguelChairman, House of Representatives Health Committee
- Honorable Members of the Senate and the House of Representatives16th Congress of the Republic of the Philippines
Early Deliberation and Passage of the "Rare Disease Act of the Philippines" within the 16th Congress
Persons (mostly children) afflicted with a rare genetic disease are "orphaned" by society. They suffer from social abandonment because of lack of existing network of support to aid them. Medical help is elusive under the conditions of the country's health priority. Because the nature of rare disease (otherwise known as orphan disorders) are long standing, life threatening, progressive and require multidisciplinary care, essential treatment and supportive care likewise require lifelong administration.
Persons born with and afflicted with rare or orphan disorders are a vulnerable and special population. Despite the small population, like any other Filipino citizen, they too have an equal right to life and and equal right to access health support.
The early passage of this legislation will ensure the inclusion of this sector in the Universal Health Program of President Aquino’s administration where "nobody is left behind"
The law will put in place a permanent and sustainable mechanism by which the State shall institutionalize a system that is comprehensive, integrative and sustainable, and will facilitate the collaboration of various stakeholders towards the provision of early and sustainable care of every person afflicted with rare or orphan disorders.
The Philippine Society for Orphan Disorders, Inc. a patient and family support program was organized to coordinate all viable efforts to sustain a better quality of life for Filipino citizens with orphan or rare disorders, most especially those who are financially marginalized and are unable to access early treatment and supportive care.
For these marginalized sector, access to health services and health coverage will reduce out of pocket spending of the family, minimizing the catastrophic expenditures that drive a family to poverty.
Your support and leadership in enacting the “Rare Disease Act of the Philippines” is very valuable and critical in providing the sustainable pathway to support, resources and hope
- Chairman, Senate Health Committee
Senator Teofisto Guingona III
- Chairman, House of Representatives Health Committee
Congressman Eufranio Eriguel
- 16th Congress of the Republic of the Philippines
Honorable Members of the Senate and the House of Representatives
Sponsors of “ Rare Disease Act of the Philippines”
Hon. Sen. Pia Cayetano
Hon. Sen. Cynthia Villar
Hon. Congresswoman Rosemarie Arenas
Hon. Congressman Gustav Tambunting
Hon. Congressman Randolph Ting
Hon. Congressman Alfredo Vargas III
Since the 14th Congress , the Philippine Society for Orphan Disorders Inc. has submitted and refilled a proposed bill entitled , “Rare Disease Act of the Philippines”.
The bill provides the creation of a comprehensive and sustainable health system for people afflicted with a rare disease (otherwise known as orphan disorder) The bill will provide patients and their families access to early diagnosis and medical care integrated into existing public health care system. The bill likewise intends to integrate informational programs on rare diseases for the general public and health care practitioners. It provides a system to coordinate a sustainable research & development initiatives and resource generation efforts among relevant agencies of government and private sector towards improving the quality of life of patients with rare diseases and their families.
In behalf of our patient families, we appeal to you all for the early deliberation of the bill when the Congress resume its sessions this August and the passage of this legislation within the 16th Congress.
The rationale for this appeal cites one of the centerpiece program of this government, the Universal Health Program where “ no one is left behind” The various rare disease groups and their families, individually few but collectively a significant population, have a right to life and a right to access health support, the same rights as every Filipino citizen. Because the health conditions of these patients (who are mostly children) are long standing, we need this law to ensure permanency and sustainability.
The families of these patients need this law to alleviate their heavy burden. Without this legislation, the long standing financial burden will eventually deprive most family members resources opportunities to improve their economic situation and/or opportunities to become productive self sufficient citizens.
In behalf of the patient families, we thank you for your support, determination and leadership in making this piece of vital legislation possible this 16th Congress for our sector.
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