Get to know the 10 key provisions of the Rare Diseases Act of the Philippines, RA10747

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• 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.

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Health Promotion and Advocacy Update
Series of 2016

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. 

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:

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Advancing the SDGs in the context of VYLH-Philippines Advocacies

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• With the recent end of the Millennium Development Goals (MDGs), the global community has moved towards the adoption of 17 Sustainable Development Goals (SDGs) that are set to be completed from 2016-2030.
• Building on the eight Millennium Development Goals (MDGs), the SDGs aim to end poverty, fight inequality, tackle climate change and protect the environment.
• VYLH-Philippines advocacies primarily respond to the Health SDG (Goal 3) particularly the prevention of newborn deaths and promotion of universal health coverage.
• In addition to this, promoting public awareness on the importance of folic acid supplementation in the prevention of neural tube defects addresses prevention of potential newborn deaths, and the nutritional needs of women in the reproductive age, at the same time.
• Meanwhile, the enactment and future implementation of the RA 10747 (Rare Diseases Act of the Philippines) will not only address the health of Filipino rare disease patients but also their inclusion to society.

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Health Promotion and Advocacy Update
Series of 2016

What are the SDGs?

The Sustainable Development Goals, also known as Global Goals, were adopted by world leaders at the UN Sustainable Development Summit on 25 September 2015. The 17 goals set for another fifteen years, 2030, aim to end poverty, fight inequality, tackle climate change and protect the environment. The SGDs are included in the 2030 Agenda for Sustainable Development.

Moving Forward: From MDGs to SDGs

Built on the progress made by the Millennium Development Goals (MDGs) or the eight anti-poverty targets that the world committed to be achieved by 2015, the SDGs have a broader sustainability agenda that go beyond the MDGs. Adopted in 2000, the MDGs were targets that tackled poverty, hunger, disease, gender inequality and access to water and sanitation.

Based from a World Health Organization release, “the 17 SDGs are broader and more ambitious than the MDGs, presenting an agenda that is relevant to all people in all countries to ensure that "no one is left behind." The new agenda requires that all three dimensions of sustainable development – economic, social and environmental – are addressed in an integrated manner”.

VYLH-Philippines and Its Advocacies

The Volunteers Youth Leaders for Health – Philippines (VYLH-Philippines) is a national collaboration of youth leaders of youth organizations in universities and communities in the Philippines. This novel undertaking is part of an international effort to establish the March of Dimes - Global Network for Maternal and Infant Health (GNMIH) participated by youth counterparts in China and Lebanon linked by the common interest of volunteerism and public service, to improve birth outcomes worldwide through advocacy.

Since its inception in July 2009, the leaders of the VYLH network have been conducting advocacy and promotional work in their respective schools and communities focusing on the following health concerns:

• Increasing awareness among women in their reproductive age on the significance of folic acid supplementation in the prevention of birth defects;
• Increasing public awareness in saving babies from mental retardation and death through newborn screening; and
• Lobbying public support for the urgent passage of the Rare Disease Act, an act addressing the needs of patients with rare, orphan disorders.

Causes of 2.761 M deaths during the
neonatal period, worldwide (2013/WHO)

In 2015, promoting prematurity awareness was placed as an advocacy for consideration of the network. According to the WHO, prematurity is the leading cause of death in children under the age of 5 worldwide. In social media, materials and infographics on global and national statistics on premature births, complications and risk factors were posted and shared in time for World Prematurity Day (November 17). One of the points highlighted in the campaign is the importance of awareness in the prevention of preterm births.

Furthermore, the network has also played an active role in promoting the concern on birth defects - awareness, prevention, care and research, as it participated as an international partner of World Birth Defects Day (March 3) this 2016.

Both birth defects and preterm births contribute to more than 40 percent of neonatal deaths in  2013(WHO). The two are also within the scope of the goals and programs of GNMIH.

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In Focus: Newborn Screening Continuity Clinics

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• Newborn Screening Continuity Clinics (NSCCs)  provide long-term follow-up management of patients confirmed with heritable disorders.
• Fourteen (14) NSCCs were established throughout the country before the end of 2014.
• Initially, one NSCC will be set-up per region. NSCCs are based in regional and provincial referral center identified by the Department of Health.
• It is hoped that provincial continuity clinics will be established in the future.
• NSCCs will also assume an important role in the referral and management of rare disease patients as mandated by RA10747.

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Health Promotion and Advocacy Update
Series of 2016

Newborn Screening Continuity Clinics (NSCCs)  provide long-term follow-up management of patients confirmed with heritable disorders. Their creation is a response of the Department of Health (DOH) to the mandate of RA9288 (Newborn Screening Act of 2004) particularly on its role on ensuring the establishment of a network of facilities for referral and management of all positive cases. Before the end of 2014, fourteen (14) NSCCs were fully instituted and operationalized. This is according to the Newborn Screening Reference Center's (NSRC) report published in the January-February 2015 Issue of Newborn Screening.

Following DOH A.O. No. 2014-0035, the establishment of NSCCs will strengthen the National Comprehensive Newborn Screening System Treatment Network by ensuring the early treatment and appropriate management of positive cases. The NSCCs are based in regional and provincial referral centers identified by the DOH. Initially, one NSCC will be set-up per region. It is hoped that provincial continuity clinics will be established in the future. 

Photo: Newborn Screening/NSRC January-February 2015 Issue

Photo: Newborn Screening/NSCR January-February 2015 Issue

Continuity clinics conduct regular monitoring and assessment of patients confirmed with heritable disorders. Continuity clinics also serve as birth defects center under the Philippine Birth Defects Surveillance Project. All of the continuity clinics are manned by at least a full-time nurse and a part-time pediatrician. The NSCC team members ensure that newborns confirmed to be having the disorders in the panel are followed up regularly and get to live normal lives. Their core responsibilities include performing patient and family-centered activities. 

The NSCC team also maintains a continuous relationship with the family of patients; monitors their compliance to treatment through scheduling, follow-up appointments and workups; facilitates referral of patients to available subspecialists in their facility or region; and provides continuing education to patient, family, and support group.

NSCCs also collaborate with other agency partners of the program (DOH Regional Offices, Newborn Screening Centers (NSCs), Clinical Genetics Units, Newborn Screening Reference Center (NSRC), health facilities, health practitioners, and local government units) in the course of fulfilling their responsibilities.

With the recent enactment of RA10747 or the Rare Diseases Act of the Philippines, the NSCCs shall also play an important role in the referral and management of rare disease patients.  As stated in the new law, rare disease refers to disorders such as inherited metabolic disorders and other diseases with similar rare occurrence as recognized by the DOH upon recommendation of the Rare Disease Technical Working Group to be created by the agency. At present, the Institute of Human Genetics-NIH of the University of the Philippines Manila has categorized rare disorders as any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country.

The following are the contact details and host facilities of the NSCCs (as of August 2015):

Source: Newborn Screening Reference Center

For updates, visit the Newborn Screening Reference Center website (newbornscreening.ph)
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Reference: Newborn Screening (The Official Bi-monthly Newsletter of the NSRC) January-February 2015 Issue

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