- The Rare Disease Bill was first filed in 2009 and it took three Congresses (14th, 15th and 16th) spanning almost seven years before it was enacted.
- On its third and final reading, lawmakers unanimously approved the bill in both Houses of Congress.
- President Benigno Aquino III signed RA 10747 or the Rare Diseases Act of the Philippines on March 3, 2016 - the first formal observance of World Birth Defects Day in the country.
- RA 10747 is an act promulgating a comprehensive policy in addressing the needs of persons with rare disease.
Health Promotion and Advocacy Update
Series of 2016
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| Photo: VYLH-Philippines/National Rare Disease Week Facebook Page |
A THROWBACK. Rare disease bills were first filed in 2009 during the third regular session of the 14th Congress. It was filed again in 2010 when the 15th Congress started. However, the bill only reached the committee level for both attempts.
In 2013, numerous rare disease bills were filed in the two Houses of Congress. In the 16th Congress, nine rare disease bills were filed in the House of Representatives while five were filed in the Senate. As compared to the two previous Congresses and the early years of the 16th Congress, much of the legislative developments for the proposed bills happened in 2015 with both Houses consolidating rare disease bills, and rare disease bills passing beyond the committee level.
At the plenary level, the rare bills gained high approval on its third and final reading as reflected by the unanimous votes among lawmakers (204-0 and 16-0). The House of Representatives was able to vote on the bill in August while the Senate followed in December.
At the plenary level, the rare bills gained high approval on its third and final reading as reflected by the unanimous votes among lawmakers (204-0 and 16-0). The House of Representatives was able to vote on the bill in August while the Senate followed in December.
Before going into its Christmas break, the Lower House approved the Senate's bill as an amendment to its version which made the bill skip bicameral proceedings. The consolidated version reached the President's Desk for his signature and approval on February 2016 and it was eventually signed on March 3, 2016. The day is also the first formal observance of World Birth Defects Day in the Philippines.
THE LIST. Here are the TEN (10) Key provisions of RA 10747 or the Rare Diseases Act of the Philippines:
1. Rare Disease Patients are PWDsUnder the law, patients with rare disease will be considered as persons with disabilities. With this, they will also enjoy the rights and benefits of persons with disabilities (PWDs) under RA7277 or the Magna Carta for Disabled Persons, as amended.
2. A Healthcare System for Rare
The Department of Health (DOH) together with the National Institutes of Health (NIH-UP Manila) shall create a system for the identification, management and registration of persons with rare disease.
The Department of Health (DOH) together with the National Institutes of Health (NIH-UP Manila) shall create a system for the identification, management and registration of persons with rare disease.
Under this system, all rare disease patients shall:
- be referred to a Regional Newborn Screening Continuity Clinic (NSCC)
- be included in the National Rare Disease Registry, a secured health information system on the data on rare diseases, persons with rare diseases, orphan drugs and products.
- have better access to a support system through the Rare Disease Management Program, a comprehensive program that encompasses diagnosis, clinical management, genetic counseling, and drug research development.
3. The RDTWG
The DOH shall organized the Rare Disease Technical Working Group for the identification of rare diseases, orphan drugs and orphan products.
The DOH shall organized the Rare Disease Technical Working Group for the identification of rare diseases, orphan drugs and orphan products.
4. Reporting to the Registry
Healthcare institutions and practitioners are required to report diagnosed cases and the status of patients to the Rare Disease Registry.
Healthcare institutions and practitioners are required to report diagnosed cases and the status of patients to the Rare Disease Registry.
5. A Practitioner's Responsibility
A healthcare practitioner attending to a person with a rare disease has the responsibility of informing patients and their families of available resources and the nearest available specialist.
A healthcare practitioner attending to a person with a rare disease has the responsibility of informing patients and their families of available resources and the nearest available specialist.
6. Continuing Education and Training Programs
The DOH, together with the NIH, professional societies and academic institutions shall conduct continuing education, information and training programs for healthcare practitioners on the identification, referral, and medical management of persons with rare disease.
A system that would train a sufficient number of medical specialists to diagnose and manage persons with rare disease will also be developed by the DOH and the NIH.
The DOH, together with the NIH, professional societies and academic institutions shall conduct continuing education, information and training programs for healthcare practitioners on the identification, referral, and medical management of persons with rare disease.
A system that would train a sufficient number of medical specialists to diagnose and manage persons with rare disease will also be developed by the DOH and the NIH.
7. Public Education and Information Campaign
The act recognizes the importance of a "culturally-sensitive public education and information campaign" on the nature of rare disease in helping the public understand the special needs of persons afflicted with rare diseases, as well as their right against ridicule and discrimination. Such campaign would involve the participation of concerned government agencies, professional societies and non-government organizations.
The act recognizes the importance of a "culturally-sensitive public education and information campaign" on the nature of rare disease in helping the public understand the special needs of persons afflicted with rare diseases, as well as their right against ridicule and discrimination. Such campaign would involve the participation of concerned government agencies, professional societies and non-government organizations.
8. Inter-agency Action
Government agencies such as the DOH (as lead agency), Food and Drugs Administration (FDA), NIH-UP Manila, DILG, DepEd, DSWD, DOLE, DOST and other related agencies shall be involved in the implementation of the Rare Disease Act.
Four agencies namely the DILG, DepED, DSWD and DOLE were tasked to ensure that persons with rare disease are given the opportunity to be productive members of society and that they are given the same rights and benefits as PWDs.
Government agencies such as the DOH (as lead agency), Food and Drugs Administration (FDA), NIH-UP Manila, DILG, DepEd, DSWD, DOLE, DOST and other related agencies shall be involved in the implementation of the Rare Disease Act.
Four agencies namely the DILG, DepED, DSWD and DOLE were tasked to ensure that persons with rare disease are given the opportunity to be productive members of society and that they are given the same rights and benefits as PWDs.
9. Medical assistance for Rare Disease Patients
Medical assistance under the Philippine Health Insurance Corporation (PHIC/PhilHealth) and the Sin Tax Reform Act (RA10351) shall be given to persons with rare disease.
Medical assistance under the Philippine Health Insurance Corporation (PHIC/PhilHealth) and the Sin Tax Reform Act (RA10351) shall be given to persons with rare disease.
10. Tax and Custom Duties Exemption
An exemption on taxes and custom duties shall apply to all donations intended for research on rare diseases. maintenance of the rare disease registry, and the purchase and importation of orphan drugs and products for use solely by patients with Rare Disease, as certified by the FDA.
For a complete copy of RA 10747, visit the Official Gazette. #RPascual
An exemption on taxes and custom duties shall apply to all donations intended for research on rare diseases. maintenance of the rare disease registry, and the purchase and importation of orphan drugs and products for use solely by patients with Rare Disease, as certified by the FDA.
For a complete copy of RA 10747, visit the Official Gazette. #RPascual
The bill for a Rare Disease Act of the Philippines has gained congressional approval with the passage of the bill at...
Posted by National Rare Disease Week Philippines on Sunday, February 21, 2016
