#YouthForHealth: Why talk about RARE?

Photo: Care For Rare Dumaguete

We’ve seen it in posters in maternity clinics and hospitals. Our government has been actively campaigning to detect some of it through expanded newborn screening, but some mothers never understood the purpose of such a process. 

Rare diseases can be a silent, deadly killer because only few understood how it attacks. There are over 6,000 rare diseases that affect over 300 million people worldwide. Each condition has an impact on everyday life, including the need for a daily care routine. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Despite all of these, rare diseases are also rarely talked about in the media. The issue has been neglected by significant media here and abroad. Organizations that lobby for more support and resources for the cause have been having a hard time for the past few years.

We asked some Cebuano members of Volunteer Youth Leaders for Health - Philippines, a collaboration of youth leaders and organizations in universities and communities throughout the Philippines, on why it is essential to talk about rare diseases.

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Kayzel J. Maata, 19

BS Biology student

University of the Philippines Cebu

Building awareness about rare diseases is so important because this can truly help those who are affected. Rare diseases affect just a few individuals and pharmaceutical companies don't give much attention to developing treatments because they know that not so many people would need and buy them. Certainly, this is an unfair thing for patients with rare diseases. Thus, awareness should be raised to address their needs, so that care and treatments would be made available for them.

Lance Beniga, 19

BS Biology student

University of the Philippines Cebu

It is important to talk about rare diseases because these kinds of diseases are only known by few people. By that, pharmaceutical companies do not give that much attention about the cure because of its lesser reach. As members [of VYLH-Philippines], we believe that it is important to advocate for the care and needs of rare disease patients.  It is hoped that through an information drive, the public will be aware of such diseases. And by that, pharmaceutical companies will be obliged to find such cure.

Gale Rizarri Enad, 20

BS Nursing student

University of Cebu

It is important to talk about rare diseases so that people will know that rare diseases exist. They should also have health care treatment and receive budget allocation for research similar to other more known diseases.

Marius Eldrid A. Bohol, 19

BS Nursing student

University of Cebu

We should talk about rare disease because it may significantly affect a person's well-being. The percentage may be very tiny, as it is rare, but we still need to talk about this because our future children might have this. This can affect anyone including the person reading this or their loved ones. Through talking about this concern in the society, we can inform, educate, and communicate the possible ways of providing care and lessening the burden of the disease among patient families in the community. With the simple act of talking about the rare disease, one may change a person's future.

Ma. Angelica Haictin, 19

BS Biology student

University of the Philippines Cebu

We should talk about these because our indifference is just as deadly, if not worse, than the actual rare diseases themselves. It's not a solution, but talking about rare diseases means acknowledging that there is a problem, and we need to do something about it.

Atthea Jane Lepiten, 19

BS Radiologic Technology student

Cebu Doctors University

Rare diseases only happen to one in thousands of children. Ironically speaking, it is rare but it should be tackled and talked by more people. The disease can kill a child on a whim without them even knowing.

Roda Gayle Rañada, 20

BS Chemical Engineering student

Cebu Institute of Technology - University

Rare diseases should be talked about because it is not much known especially to the common folk. People should know that they exist and be aware of the journey of the people that are affected by these. We should support and be there for them because their struggle is also our struggle, as well. I believe that we should not be ignorant of matters like these because we are part of a growing society that nurtures and cares for one another.

Claire Angelie Z. Sadicon, 20

BS Pharmacy student

University of San Carlos

Only a few people know about rare diseases. Often, people misunderstood and mislabeled them as "abnormal." Even with just this reason, it shows how important it is to talk about rare diseases or the people who have these diseases.

Patients with rare diseases also get neglected most of the time, and this is unfair because they deserve the same quality of care as any other patient. It is essential that these should be talked about because these things matter. As Dr. Tolar said, “It is easy to dismiss rare diseases as something that can never happen to you, to your family. But to the family impacted, it doesn’t matter that it’s a rare disease. It’s the disease that changes their life." (University of Minnesota, 2017)

Niño Jan Vergara Miole, 21

BS Nursing student

University of Cebu

As a nursing student, it is my advocacy to bring health-related matters to the forefront of societal endeavors to bring its awareness in the limelight. After all, health is a fundamental right, not a privilege. I believe that we can create a healthier Philippines if everyone has the desire to become active participants of their health.

Talking about rare disorders isn't for show. It transcends superficial discussions and elevates the bar of competency of mothers in improving their care to their children. It transformed them to become empowered individuals to take action, and that is the cornerstone of having a healthy life. Rare disorders are not taboo. Be open to sharing your rare, and show that you care.

Klein Rowen N. Cantiveros, 25

Nurse

Department of Health Region VII

It is relevant to talk about rare diseases to increase awareness. Aside from that, people need to know that these cases are present and are left untreated due to poor financial support. Also to give hope to families that they are not alone in this battle and that there are people willing to help them.

Neil Christian General, 24

Faculty Member

University of Cebu

It is very important for us to talk about rare diseases because these are the diseases that no one, or only a few, cares about. We need to raise everyone's awareness on these conditions as the treatment and medicines for these conditions are normally very expensive. And, on a business standpoint, pharmaceutical companies cannot earn much from formulating drugs for these diseases as there is no enough demand. As such, there is a need for us to support the families of those affected and in a way, by being their voice.

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The youth have produced significant contributions throughout the years, but they are often neglected because of their age. The youth may be judged inexperienced and naive, but if society will listen to their suggestions, everyone can learn a lot from them.

As cliche as it may sound, but the youth indeed is the hope of the nation. The people of yesterday should listen to the people of today because the future does not only rely on their actions. Future generations will also carry the burden of the mistakes being done today. 

Perhaps, it is time to listen to them again!

Written and compiled by Maurice Jitty Villaester 

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Maurice is a Master of Development Communication student via distance learning from the University of the Philippines Open University. A native of Baril, Cebu, he joined VYLH in 2018 as part of Batch Hayaw.

Ed RPascual

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10th National Rare Disease Week to focus on “Bridging Health and Social Care”

On February 22-28, the Philippines will be celebrating the 10th National Rare Disease Week. Together with the rest of the world, the country will also observe World Rare Disease Day on February 28 with the theme “Bridging Health and Social Care”. The theme highlights the need to bridge the gaps in coordinating medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

There are over 6,000 rare diseases that affect over 300 million people worldwide. Each disease has an impact on everyday life, including the need for a daily care routine. For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Most rare disease patients have difficulties in completing basic daily tasks. As a result, the majority of care is usually coordinated by people living with a rare disease and their family members who spend a significant amount of time organizing care. Organizing care can involve researching local services, making phone calls, accessing treatments and rehabilitation, handling administrative procedures and adapting the home or work space. It becomes a complex and frustrating process, especially when a lack of coordination across services means having to repeat the same information over and over again. Communication between different services needs to improve so that services are delivered efficiently to meet the patients’ best interests.

This year also marks the third year since the enactment of the Rare Diseases Act of the Philippines (RA 10747) – a key legislation for the care and welfare of the Filipino rare disease patient by institutionalizing a comprehensive, integrative, and sustainable system that will facilitate the collaboration of government and non-government agencies, private sector, professional health organization, and academic institutions. Together with the recent enactment of the Universal Health Care Act (RA 11223), it is hoped that the delivery of services and government support for rare disease patients will improve as this law takes full effect in the coming years.

The annual observance of Rare Disease Day culminates National Rare Disease Week. Now on its 12th year, celebrating Rare Disease Day provides an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. #

To learn more about this year's social media campaign, visit www.psod.org.ph or the National Rare Disease Week - Philippines Facebook page bit.ly/NRDWnote2019

Philippine Society for Orphan Disorders, Inc.

www.psod.org.ph

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Rare disease advocacy takes center stage at 2016 NBS Convention

PASAY CITY -  Last October 24-25, the Newborn Screening Society of the Philippines (NSSP) and the Newborn Screening Reference Center (NSRC-NIH, UPM) gathered 1800 professionals, practitioners, guests, and newborn screening advocates for the 14th National Newborn Screening (NBS) Convention at the Philippine International Convention Center in Pasay City. The convention was even made more special with the celebration of the first two decades of newborn screening in the Philippines as reflected on its theme “Celebrating 20 years of Newborn Screening towards Overall Screening and Management”.

PSOD President Cynthia Magdaraog and
her son, rare disease patient-advocate
Juan Benedicto "Dickoy".
Photo: H&L Philippines

During the convention, local and international speakers shared implementation strategies, developments and recent technologies in newborn screening. Among the plenary speakers was Philippine Society for Orphan Disorders (PSOD) President Mrs. Cynthia Magdaraog who encouraged everyone in attendance not only to advocate for newborn screening but also for rare diseases.

At present, three out of the six conditions in the 6-test newborn screening panel fit to the current accepted definition of a rare disease in the Philippines - a condition with a prevalence of 1 in 20,000 or lower. These include Galactosemia, Phenylketonuria and Maple Syrup Urine Disease. With the recent introduction of expanded newborn screening, it is now possible to detect more than 20 additional rare disorders, as well as provide timely and appropriate treatment for these conditions.

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UPM Chancellor Padilla to receive Global Genes Rare Champion of Hope award

Global Genes, one of the leading rare disease patient advocacy organizations in the world has selected Dr. Carmencita Padilla as one of the 2016 Rare Champions of Hope. Dr. Padilla will receive a “Rare Champion of Hope” recognition under the Medical care and Treatment -International category. 

As published on the Global Genes website, Dr. Carmencita Padilla, the current Chancellor of the University of the Philippines Manila was recognized for her “remarkable contribution to the rare disease community [which] has made her a beacon of hope for many in the Philippines. She is instrumental in creating genetic services at the Philippine General Hospital, which later became the Institute of Human Genetics of the National Institutes of Health-UP Manila. She introduced newborn screening for optimal health in the Philippines and is responsible for the Newborn Screening Act of 2004. Dr. Padilla is also Founding Chairman of the Philippine Society for Orphan Disorder and is again instrumental in the passage of the Rare Disease Act of the Philippines enacted March 2016, after 7 years of deliberating with 3 congresses. Her innovations are influential in providing all aspects of support and awareness about rare disease in the country and beyond." [1] 

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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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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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Rare Disease bill moves closer to passage

The House of Representatives 

Health Promotion and Advocacy Update

There are already a number of rare disease bills filed in the Senate and House of Representatives since the 14th Congress, and now, the Rare Disease Bill moves closer to passage within the 16th Congress with its approval in the House of Representatives last August 24, 2015.

The Rare Disease bill ensures that persons with rare diseases will receive necessary medical information, healthcare, as well as rights and benefits as Persons with Disabilities (PWDs). It will also integrate the care and management of patients with rare disease to the current public healthcare system, and contribute on achieving Universal Healthcare.

Rare diseases are life-long, progressive, degenerative, life-threatening and disabling conditions. At present, a disease is considered rare if it affects 1 in 20,000 individuals or less, as defined by the Institute of Human Genetics (IHG)-NIH, UP Manila. It is estimated that around 6,000 to 10,000 individuals, mostly children, in the Philippines are afflicted with rare diseases. 

Among the rare diseases mentioned in the bill are Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome and Lubag. Some rare diseases are detected through newborn screening (NBS) – both basic (6-test panel) and expanded NBS.

The version of the Rare Disease bill in the House is a consolidation of nine house bills and it was authored and supported by principal author Diosdado Arroyo (2nd District, Camarines Sur) and 30 other legislators. House Bill 5973, otherwise known as the “Rare Diseases Act”, mandates the formation of the Rare Disease Technical Working Group (RDTWG) under the Department of Health (DOH), the lead agency in implementing the measure. Among the tasks of DOH-RDTWG is the identification of rare diseases, designating orphan drugs and products corresponding to a type of rare disease, as well as formulate policies on its regulation.

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"I am Rare": VYLH-PHL UP Manila lights up charity drive for 'Rare' kids

Written by Feliss Sanchez 

Original Published in Newborn Screening

March-April 2015 Issue

In its commitment to empower the youth toward optimal health, the Volunteer Youth Leaders for Health–Philippines University of the Philippines Manila (VYLH-Philippines UPM) held "I Am Rare: Alone We Are Rare, Together We Are Strong", a pilot standalone advocacy project for children with rare disorders, at the Tipunan grounds, UP Manila, on April 25.

This year’s program gathered 40 kids from its affiliate institution, the Philippine Society for Orphan Disorders (PSOD). The day-long charity drive was held to uplift the children’s spirits by evoking physiological and psychosocial awareness for young patients with rare diseases. UP Manila Chancellor Dr. Carmencita D. Padilla, who is also the National Program Coordinator and Founding Adviser of VYLH Philippines, graced the event.

“Isa akong proud na Chancellor ng UP Manila dahil sa event na ito ay mabibigyan natin ng kasiyahan ang mga batang may rare disorders,” Dr. Padilla said in her opening remarks.

Orphaned by Society

According to Rufus Thomas Adducul, VYLH–National Capital Region (NCR)-South Luzon Cluster Coordinator, Filipino children born with rare diseases are usually “orphaned” by society through social abandonment and lack of medical help. In the Philippines, a disease is considered rare if it affects one in every 20,000 individuals or less.

Celebrating Bravery

VYLH-UPM Co-Project Head Feliss Sanchez said that UPM chapter’s “I Am Rare” program recognizes the kids’ courage in facing daily challenges and that was a success in terms of giving the children what they truly deserve.

“We did this event to celebrate the strengths of these rare kids who go through the daily struggles of rare diseases, to celebrate the childhood of these kids,” she added.

Together with Cluster Secretariat Marian Therese Cuenca and participating UPM student organizations, namely, UP Health Sciences & Pre-Medicine Society (HS+PM), ALAB and College Student Council of UP College of Public Health (CPH), AWSAMS and Volunteer Corps of UP College of Allied Medical Professions (CAMP), YEARN of UP College of Nursing (CN), ProPharm of UP College of Pharmacy (CP), Biological Sciences Society, Biochemistry Society, and OMAKE of UP College of Arts and Sciences (CAS), VYLH prepared several presentations and booths for the children.

Disney-themed characters presented different theatrical plays for the kids who were given “student buddies” to guide them throughout the day. Moreover, the UP College of Medicine Choir sang the national anthem, while UPM’s Indayog dance varsity, CAMP Synergy, and Pharm Jam also performed for the children.

Fight for Quality Life

During the commitment ritual led by National Secretariat Aster Lynn Sur, parents and guardians of the rare kids expressed their deepest gratitude to the National Institutes of Health (NIH), VYLH-Philippines, PSOD, and UPM students for inspiring the kids to fight another day.

“Malaki ang pasasalamat namin sa inyo dahil bilang isang magulang, basta makita namin silang masaya ay masaya na rin kami,” expressed a parent of a child with Gaucher’s disease.

To cap off the program, selected children performed a dance number to the tune of PSOD theme song, Lalaban Kami. The song encourages the children further to continue their fight for a better life.#

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To read more articles from the Official Bi-monthly publication of the Newborn Screening Reference Center, download the full issue of 'Newborn Screening' through the following link: March-April 2015 Issue

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Social Media Activities for Rare Disease Week 2015

Social media activities for Rare Disease Week 2015

Senator Pia Cayetano endorses Raise and Join Hands for Rare and Wear that you care

in a privilege speech last February 25, 2015

Compilation of VYLH-Philippines and PSOD Raise and Join Hands for Rare Photos

Official Rare Disease Day 2015 Video (rarediseaseday.org)

VYLH-Philippines two info-media albums on Facebook

Care for Rare and Rare but Real

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NAST-PHL: Rare Diseases to be part of the country’s Universal Healthcare

REPOST

Original Article A. Manuel

Published Online NAST-Philippines

“There is a need for a policy to address the needs of the persons with rare diseases”, said Acd. Carmencita Padilla. during the Roundtable Discussion (RTD) on Rare Diseases last October 30, 2014 at Traders Hotel, Manila. The RTD was organized by the National Academy of Science and Technology, Philippines (NAST PHL) through its Health Sciences Division (HSD).

The scenario of rare diseases in the country was reviewed on a global and local scale by Dr. Mary Anne Chiong, a biochemical geneticist from the National Institutes of Health, University of the Philippines Manila. According to Dr. Chiong, the definitions of rare diseases vary depending on the number of incidences in a country. Globally, 350 individuals are diagnosed with rare diseases. However, according to the World Health Organization (WHO), orphan disorders, another name used to refer to rare diseases, occur in 6.5-10 out of 10,000 population. It is estimated that there are more than 7,000 different types of orphan disorders. In her presentation, the country’s situation and challenges in caring for these patients were assessed. She identified the challenges as delay in diagnosis, misdiagnosis, limited and high-cost of scientific treatment, and the social and emotional burden on patients and family with rare diseases.

Mr. Juan Benedicto K. Magdaraog, a patient with Pompe Disease, also served as a speaker. He shared his life with Pompe disease and the rare disease’s impact on his childhood, his well-being, as well as on his dreams and aspirations. He shared his story of overcoming many limititations and moving forward despite Pompe. Mr. Magdaraog, also called “Dickoy”, expressed his will to “change how people perceive people with rare diseases”.  He is a graduate of a degree in Industrial Design from College of Saint Benilde, De La Salle University and is currently working as a front-end web designer of an IT company.  

The RTD briefed the various stakeholders on the elements of the Rare Disease Act through the video of Senator Pia Cayetano’s privilege speech at the Senate of the Philippines last September 3, 2014. One highlight of the bill is allocating a portion of the RA 10351 or the Sin Tax Reform Act to health services for patients with rare diseases.

Acd. Padilla, a member of the Health Sciences Division of NAST PHL and focal person of the RTD, gave an in-depth discussion of the Rare Disease Act. The main objective of the bill is to ensure that patients with rare diseases have access to health information and medical care, including medication for their condition, and thus, will be recipients of the country’s universal health care. She also emphasized the role of different government agencies in the implementation of the bill — the Department of Health will lead this effort, while Food and Drug Authority (FDA) will review and approve the needed drugs. The National Institutes of Health (NIH) will provide technical assistance. On the other hand, the Department of Interior and Local Government (DILG) will involve the LGUs and the Department of Education will ensure health education on Rare Diseases. The Department of Social Welfare and Development (DSWD) will take care of the welfare of the people with rare diseases, including their families and Department of Labor and Employment (DOLE) will support the provision of jobs for people with rare diseases. Lastly, DOST will have a major role of providing research funding for diagnostics and development of low cost medications and products for these patients.

Read the Full Article (nast.ph)

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Volunteer Youth Leaders for Health-Philippines received an invitation from NAST-Philippines. The network was represented by members from the NCR-South Luzon Cluster.

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Moving forward: Viral ALS challenge ignites Senate support to PHL Rare Disease Bill

Post by Volunteer Youth Leaders for Health - Philippines.

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Anniversary Message from PSOD and Launch of the Online Petition for a Rare Disease Act of the Philippines

July 18, 2014

Dear Officers and Members of the Volunteer Youth Leaders for Health - Philippines, 

Greetings and congratulations on your 5th Founding Anniversary! 

In behalf of the Philippine Society for Orphan Disorders (PSOD), we convey our deepest gratitude for the nationwide support you have given us for the past five years in promoting our advocacy. 

Over the years, we have felt significant progress in growing awareness and support from the general public and private sectors for our member patient families. Much of this we sincerely attribute to the creative programs you have launched nationwide, most especially during the yearly celebration of the National Rare Disease Week and World Rare Disease Day. The voluntary participation of your members at PSOD’s activities is much appreciated. We are truly so blessed by your partnership.

We are ecstatic that you have initiated and have chosen to launch the online petition to call for the support of the enactment of the “Rare Disease Act of the Philippines” at Change.org on this special day, your Fifth Founding Anniversary. The journey to realize this into law will be long and very challenging. Your viral support will be very crucial. We truly believe that hand in hand, working together, this can be realized, and that someday, soon sustainable access to health support for persons afflicted with rare disease and their families will be possible. 

We wish you success in growing your organization and individual fulfillment in the laudable work you all do together. In behalf of our member patient families, the Board of Directors and staff of PSOD,….MARAMING, MARAMING SALAMAT.

Sincerely, 

(signed)
Cynthia K. Magdaraog
President

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SIGN NOW. Visit the Online Petition for the Early Deliberation and Passage of a
"Rare Disease Act of the Philippines" within the 16th Congress

Since it's inception in 2009, VYLH-Philippines has been conducting activities designed to increase the public's awareness on the plight and fight of Filipino with orphan or rare disorders. These 

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 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. 

SIGN NOW. Click this link to visit the Online Petition Site.

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VYLH-Philippines Programs recognized as Outstanding Health Awareness Project

Written by Robin Charles O. Ramos

VYLH-Philippines Mindanao, K4

The Global Youth Service Day (GYSD) is an annual international gathering of young volunteers spearheaded by Youth Service America (YSA). The event is conducted every April and is celebrated in more than 135 countries. It is dedicated to children and the youth and is claimed to be the largest service event in the world, since its establishment in 1988. For four years now, the Voice of the Youth Network (VOTY) is the chosen campaign partner in the Philippines.

In celebration of this year’s GYSD, the VOTY Network launched its first ever youth-led award giving body― the VOTY Awards. The citation is created to recognize deserving young individuals and youth-led and youth-serving organizations in the country that provide positive social change and share the same passion in serving the Filipino youth.

The Volunteer Youth Leaders for Health-Philippines (VYLH-Philippines) is a recipient of one of the prestigious awards given during the VOTY Network Kabataan Night 4: The Youth Revolution. This is a trademark activity where over 300 youth and youth organizations showcased their talents through literary-musical variety shows and various performing arts. It was held on May 4, 2014 at Mabuhay Restop, Rizal Park, Manila City. The three health advocacies of VYLH-Philippines are applauded by the VOTY Network as one of the Outstanding Health Awareness Projects of the year.

VYLH-Philippines' Programs recognized as one of the
Outstanding Health Awareness Projects of the Year

VYLH-Philippines is a network of more than 100 youth organizations in universities and communities nationwide. The main goal of the organization is to create a network of youth leaders and youth organizations in schools and communities in the Philippines who will champion in increasing public awareness on existing health programs, and on the significance of healthy lifestyle at an early age. 

The Network engages in three flagship advocacies namely: 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.

The recognition received by the VYLH-Philippines is an inspiration in fostering strong partnerships with other youth-led and youth-serving organizations, as well as, advancing its advocacy to train young leaders, empowering them for health and improving birth outcomes through advocacy. This achievement is also joined by the recently concluded youth leaders’ orientations in CAR, NCR, Southern Tagalog and Central Visayas. 

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Robin Charles Ramos is a Master in  Business Administration graduate of the Cor Jesu College  in Digos City, Davao del Sur. He is also an alumnus of  South Philippine  Adventist College where he completed his degree in Business Administration. Robin  became affiliated to the network during the 2010 Mindanao Island-wide Youth Camp.

Photo Credit: Romer Guerbo
Editor: Christine Queribin, Ryan Pascual

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Moving towards a Rare Disease Act: Understanding SB 2098

Health Promotion Update No. 1 - Series 2014
Health Promotion and Advocacy Working Group

News Release from the Office of Senator Pia S. Cayetano

Medical care for persons with rare disease sought

Senator Pia Cayetano
(https://www.fb.com/officialpiacayetano)

Under Sen. Pia’s bill, persons with rare disease to get better access to medical care

Senator Pia S. Cayetano is pushing for the passage of a bill that will mandate the government to assist persons with rare disease by increasing their access to medical treatment and drugs, and including them in the coverage of the Universal Health Care program.

Cayetano is urging support for her measure as the country marks National Rare Disease Week, which is commemorated every fourth week of Februatry, ahead of International Rare Disease Day on February 28.

Under Senate Bill No. 2098, or the ‘Rare Disease Act of 2014,’ the Department of Health (DOH) will be tasked to establish a National Rare Disease Registry which will include an inventory of rare diseases in the country, information on diagnosed patients, and a list of certified medicines and medical devices.

SB 2098 - An act promulgating a comprehensive policy in
addressing the needs of persons with rare disease
(Read the Full Text, pdf)

A ‘rare disease’ affects less than one in every 20,000 individuals, according to Cayetano, adding that most cases manifest during childhood and are genetic in origin.

“The patients, mostly children, are chronically ill and suffer from pain and isolation throughout their life. Their families also have a hard time coping because treatment is very costly and not readily available in most medical facilities,” she explained.

She cited examples of rare disorders as follows: Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phenylketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome, Edward Syndrome and Patau Syndrome.

In 2001, Cayetano lost her youngest child Gabriel from complications of a rare congenital disease called trisomy 13, also known as Patau Syndrome.

“The pain of seeing the suffering of one’s own child is so incomparable that parents would be willing to do anything to save their child’s life. Poor families caring for a family member with a rare disease would have no fighting chance, however, since they do not have access to quality and affordable medical care.”

She noted that the Institute of Human Genetics based in the University of the Philippines in Manila identified 41 rare diseases affecting 300 diagnosed patients in the country. But it is possible that many more patients remain undiagnosed due to lack of research and facilities for these rare ailments.

She added that the number of diagnosed patients could rise with the upcoming expansion of the government’s newborn screening program beginning this year, which would cover 28 rare disorders.

Under SBN 2098, patients suspected or diagnosed with rare disease will be referred to Regional Newborn Screening Centers, which will then coordinate with the DOH and concerned medical facilities for the ‘co-management’ of the patient with a specialist.

The bill likewise recommends the inclusion of rare disease treatment in the health benefit package of the Philippine Health Insurance Corporation (PhilHealth). Additionally, medical drugs and devices used for treating rare diseases will be certified by the Food and Drugs Administration (FDA) to facilitate the public’s access to these products.

Cayetano added that awareness about rare disorders remains very low, thus her bill also seeks to enhance public education and information campaigns on rare diseases through the DOH. 

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VYLH-Philippines celebrates Rare Disease Week 2014: Join Together for Better Care

WHAT IS A RARE DISEASE?

A rare disease, otherwise called an orphan disorder is any health condition resulting from genetic defects that afflicts no more than 1 of every 20,000 individuals in the country. Rare disorders afflict babies in all socioeconomic levels. Besides the little information available about their nature, what makes dealing with rare disorders even harder is that they are long-standing, progressive, disabling and life threatening.

WHY A RARE DISEASE DAY?

We constantly need to raise awareness on rare diseases among decision makers, health professionals and the general public.

Information is key to improving living conditions for rare disease patients; raising awareness is therefore one of our primary goals.

Read  more: VYLH-Philippines Primer to the Annual Rare Disease Week Celebration

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VYLH-PHL joins"Jean/Gene" Ribbon Campaign: Raising awareness to the fullest

February marks another milestone for the Volunteer Youth Leaders for Health -Philippines after the network successfully participated in the 4th Rare Disease Awareness Week and the 6th International Rare Disease Day last February 28,2013.

The dynamic volunteers of VYLH-Mindanao led the advocacy campaign in different areas as far as the provinces of Surigao del Sur, Misamis Oriental, Bukidnon and Davao. Schools, communities and even the public and private sectors were engaged in this noble act of advocating. Among the activities conducted were radio plugging and airing of Philippine Society for Orphan Disorders or PSOD’s theme song “Lalaban Kami” in Radyo ni Juan, signature campaign for the enactment of Rare Disease Act of the Philippines, display of PSOD’s slogans and posters to various institutions as well as group lectures and room-to-room orientation to selected students of Xavier University, Central Mindanao University and community high schools in Davao. The event’s highlight was the denim ribbon distribution and wearing of maong jeans in solidarity with the Global Genes Project‘s “Wear that you Care” campaign during the Rare Disease Day.

The Newborn Screening Center-Mindanao employees, spearheaded by Dr. Abarquez, once again showed their support for the occasion by marking the special day as an official blue jeans day! The wearing of maong jeans and the pinning of denim ribbons signified the personnel’s call-for–solidarity with the campaign. The Southern Philippines Medical Center staff and employees and patients also joined the week-long PSOD video film showing, signature campaign, and lectures in the different areas like the OPD, SPMC lobby, OB and Pedia wards. With the theme “Rare Disorders without Borders”, this year’s main objective was to create awareness on the different orphan and rare disorders, not only locally but globally as well.

[For updating]

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Contributors: Aple Tadlas, RN (VYLH-Philippines Mindanao Secretariat)

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Understanding MSUD (Maple Syrup Urine Disease)

Health Promotion Update No. 2 – Series 2012
Health Promotion and Advocacy Working Group

Do you know that the newborn screening panel of disorders has been raised from five to six? 

Last May 2012, the Advisory Committee on Newborn Screening of the Department of Health approved the inclusion of Maple Syrup Urine Disease (MSUD) to the newborn screening panel of disorders. Its incidence rate which is higher than PKU or Phenylketunuria was one of the prime considerations for this move. According to the Newborn Screening Reference Center, there have been 101 cases of the disorder since 1992, and out of this number, only 26 are living.

Is there any change on the cost of NBS?

The Committee resolved that the offering of the additional test to all newborns will be done without any additional cost. Still, the newborn screening fee will be based on the maximum allowable cost for the NBS collection kit (filter card) and the maximum allowable service/collection fee by the health facility (50 pesos). The current NBS fee ranges from 550 to 600 pesos, as mandated by law. 

FAQs about Maple Syrup Urine Disease

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I am Rare. I am Limited.

Written by Gian Carlo Abellana, RN*

It has been two years now since we huddled the stress, deadlines, busy schedules and less night life in college. I can barely recall sleeping for an hour and then prepare myself for another hectic day. A lot of people say that college life is full of  twists and turns- a great roller coaster ride.

One thing I would not forget when I was still in college is being part of the pioneering members of the Volunteer Youth Leaders for Health- Philippines (VYLH-Philippines). The said organization aims to mobilize youth towards health advocacies and among these are: Newborn Screening, Folic Acid Supplementation Campaign, and Rare or Orphan Disorders. VYLH is a network of leaders from different youth organizations based in universities and communities in the country. As part of the network, I was able to organize an information drive amongst my fellow students, imparting them awareness to such health issues in our country today. Remarkably, I did gained support from my classmates, friends, family, supervising clinical instructors, program coordinators, program dean and the rest of the populace in my university with my vision as a VYLH member.

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A Moment To Remember

Written by Christine Querubin*

This post is a story about a series of events that happened in one unforgettable day in the eyes of a volunteer.

It’s March 24, 2012. I woke up around 3:30 and was uber excited to join and meet the participants for the Reach for the Sky 2, a project of the group Photography with a Difference (PWD). 

05:27am- A Long Day Ahead

Our rendezvous was at the Megamall Bus stop where I got to meet the all-hyped up kids excited for what awaits them as the sun rises today.

Ate Yon from the Philippine Society for Orphan Disorders Inc. (PSOD) oriented me about my task as a volunteer for PSOD, a beneficiary organization in the event. I would be one of the marshals who would accompany the six beneficiaries from their organization as they are about to experience their very first plane ride and “reach for the sky.”

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Baby Making 101: A Personal Touch of Empathy for Babies with Rare Orphan Diseases

Written by Joan Mae Barredo*

Naughty grins underline the faces of the participants upon hearing the activity’s title. Various side comments here and there are evident in the venue for about, say, 30 seconds or so. And then, 30 minutes after, what remains is that emphatic look of compassion in their eyes.

Baby Making 101 as springboard

Baby Making 101

In connection to the various advocacies of Volunteer Youth Leaders for Health [VYLH] Philippines, especially on Newborn Screening and Rare Orphan Diseases, Baby Making 101 activity is one good avenue for health representatives to level-off the participants. This is to serve as a launch pad for processing the experience-base advocacy dissemination event.

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