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2nd National Rare Disease Week: Rare but Equal

2nd National Rare Disease Week: Rare but Equal Towards equal access to health care and social services for Filipinos with rare disorders

SAN JUAN, METRO MANILA – The Philippine Society for Orphan Disorders, Inc. (PSOD) has taken the initiative to enjoin various private and government organizations to conduct public awareness regarding the 2nd National Rare Disease Week which will be on February 21-28, 2011. Adopting the International Rare Disease Day theme “Rare but Equal”, PSOD is conducting information campaign on rare diseases and calling for equal access to health care and social services for children with rare disorders.

Rare disease week activities include: (a) country-wide signature campaign in support for a Rare Disease Act of the Philippines geared at generating awareness on and pushing for the early deliberation and enactment of Senate Bill 2042 and Lower House Bills 392, conducted in partnership with the Institute of Human Genetics, Volunteer Youth Leaders for Health (VYLH) Philippines, and different organizations and individuals; (b) public awareness campaign on 2nd National Rare Disease Week in partnership with different government agencies, hospitals, non-profit organizations, pharmaceutical companies, medical and allied medical societies, and schools and organizations; and © a tri-media campaign during the Rare Disease Week to for rare disease awareness and to lobby for support for the enactment of the Bill on Rare Disease

1 in 20,000 is rare

Children born with rare disorders may appear normal at birth, only to develop problems later in life. RARE or ORPHAN DISORDERS are conditions that affect less than 1 in 20,000 individuals. They are long-standing, life-threatening, progressive, disabling conditions that require multi-disciplinary care. The lack of understanding of these disorders makes these children at risk for serious consequences due to delay in, and sometimes, incorrect diagnosis. The lives of these children are constantly in danger because even if their conditions are diagnosed, their families cannot afford the high cost of treatment. For the few who may have the means, optimum care is still elusive due to the scarcity of available medications and health care facilities equipped to handle these individuals with special needs.

“Orphan” disorders in the Philippines

Filipino patients born with rare disorders 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. The nature of their illness is hardly known due to lack of information and only a few medical professionals, particularly in the country, are aware of these disorders and know how to diagnose and address these conditions.

Over several decades research and clinical trials worldwide have been very slow due to only a handful of known cases. However in recent past, the tireless efforts and the admirable dedication of medical researchers, professionals and drug companies in developed countries have resulted in breakthrough therapy and hopefully, a possible lifelong cure for a growing number of the rare disorders.

In the Philippines, over two decades ago, a handful of medical professionals from the Institute of Human Genetics (IHG) of the National Institutes of Health, University of the Philippines Manila have been attending to these patients, dedicating themselves to create awareness in the country, and continue to undertake clinical trials to contribute to the body of world knowledge that would lead to improving the health of Filipino patients with rare disorders.

Since 1991 these dedicated doctors have been relentlessly sourcing the much needed funds from foreign and local donors, as well as arrange with drug companies to make available under compassionate use the special food formulas, medications, and enzyme replacement therapies crucial to sustaining and improving the health condition of patients.

Because the nature of rare disorders are long standing, life threatening, progressive, and require multidisciplinary care, available therapies and food supplements likewise require lifelong administration. Until such time further breakthroughs happen (as we are very hopeful it will), without help from private sector, treatment is elusive for the patients due to its prohibitive cost and accessibility.

PSOD: Central network for advocacy and support for rare disorders

With increasing number of patients requiring huge amounts of funds, at times not readily available, in June of 2006, The Philippine Society for Orphan Disorders, Inc. (PSOD) non-profit organization was organized to continue the efforts of these doctors to ensure sustainability of medical and financial support of patients with rare disorders.

With the help of IHG and its partner organizations and donors, PSOD aims to be the central network for the advocacy and effective coordination of all viable efforts to sustain a better equality of life for individuals with orphan or rare disorders in the Philippines.

Every 4th week of February is National Rare Disease Week

Presidential Proclamation No. 1989 declares the last week of February of every year as the “National Rare Disease Week”. Signed by former President Gloria Macapagal-Arroyo in February 2010, the proclamation underlines the role of the State in protecting and promoting the right to health of the people, including the right of persons suffering from rare diseases to have access to timely information and adequate medical care. PP 1989 also underscores the urgent need to conduct a national information campaign in order to create awareness among health professionals about the nature and management of rare diseases and to instill awareness among the public about rare diseases to generate full support for the special needs of children affected by rare diseases from both public and private sectors.

Proposed Rare Disease Act of the Philippines

Senator Edgardo J. Angara introduced to the Senate last September 14, 2010 Senate Bill No. 2042, a Bill that will create an Office of Rare Diseases in the Department of Health (DOH) to supervise the implementation of a research program on rare diseases, ensure the provision of early sustainable care for patients suffering from rare diseases, and conduct public educational and information campaign on rare diseases. The Bill also seeks to provide fiscal and regulatory incentives to developers, manufacturers, and importers of medicines, medical devices, diagnostic kits, and other pharmaceutical and nutritional products needed by patients suffering from rare diseases.

If enacted, patients with rare diseases will have better access to adequate medical care, health information, and healthcare products needed to treat their condition. It will also establish a system to coordinate a sustainable research & development initiatives and resource generation efforts among relevant agencies of government and the private sector toward improving the quality of life of patients with rare diseases and their families.

Last July 2011, Rep. Sonny Angara also filed Lower House Bill 392, a bill similar to SB 2042, while Senator Lito Lapid also introduced SB 1035, a bill establishing a holistic research and development program on rare diseases with provision for the appropriation of funds by the DOH for these and related purposes.

For more information on available support for Filipinos with rare disorders, the 2nd National Rare Disease Week celebration, and the proposed Rare Disease Act of the Philippines, contact the Philippine Society for Orphan Disorders, Inc. at telefax no. (02) 725-6519, email info@psod.org.ph or visit www.psod.org.ph. You may also write to PSOD c/o Cynthia K. Magdaraog (President) at 24-D Goldland Plaza, #8 Eisenhowe St., Greenhills, San Juan, Metro Manila.

Organizations participating in the campaign for awareness re 2nd National Rare Disease Week and signature campaign this 2011:

  • Batangas Regional Hospital
  • Capitol Medical Center
  • Cardinal Santos Medical Center
  • Council for the Welfare of Children
  • Department of Social Welfare and Development
  • Down Syndrome Association of the Philippines
  • Episcopal Commission on Health Care, Catholic Bishops Association of the Philippines
  • Fe del Mundo Medical Center
  • Genzyme Philippines
  • Global News Network
  • Institute of Human Genetics, National Institutes of Health, University of the Philippines Manila
  • Jesus of Nazareth Hospital – Batangas
  • Makati Medical Center
  • Medical Center Manila
  • Mead Johnson Nutrition Philippines
  • National Council on Disability Affairs
  • Newborn Screening Center – Mindanao, Southern Philippines Medical Center
  • Newborn Screening Center – Visayas, West Visayas State University Medical Center
  • Pamantasan ng Lungsod ng Maynila
  • Parent Council for the Welfare of Hearing Impaired Children
  • Philippine Health Insurance Corporation
  • Quezon City Government
  • SM Supermalls and SM Cares
  • St. Lukes College of Nursing, University of Trinity Asia
  • St. Lukes Medical Center (Global City and Quezon City)
  • The Manila Times
  • Therapy Works
  • United Doctors Medical Center
  • United Laboratories
  • UPLB Genetics Society
  • Volunteer Youth Leaders for Health – Philippines

Rare diseases in the IHG-PSOD registry:

  • 6 Pyruvoltetrahydropterin Synthase Deficiency
  • Adrenoleukodystrophy
  • Autoimmune Chronic Active Hepatitis
  • Galactosemia
  • Gaucher Disease
  • Hemophagocytic Lymphohystiocytosis
  • Heperphenylalanemia
  • Heterozygous Cystenuria
  • Holocarboxylase synthase deficiency
  • Homocystenuria
  • Homozygous Cystenouria
  • Lowe Syndrome
  • LSD – Multiple Sulfatase Deficiency
  • Maple Syrup Urine Disorder
  • Methyl Malonic Aciduria
  • Moebius Syndrome
  • Mucolipidosis
  • Mucopolysaccharidosis
  • Niemann pick
  • Osteogenesis Imperfecta
  • Phenylketonuria
  • Pompe Disease
  • Respiratory Chain Complex/Deficiency
  • Tay Sach’s Disease
  • Tyrosinemia
  • Urea Cycle Defects
Support Groups for Rare Disorders Contact Person and Info
Philippine Society for Orphan Disorders, Inc. Cynthia Magdaraog
PSOD Web site
Cornelia de Lange Syndrome Support Group Philippines Adoniram Suarez
Osteogenesis Imperfecta Support-Philippines Jeneth Catapang
OISP
OISP Website
Moebius Sequence Philippine Support Group Wennie Estrada
MSPSG Website
Maple Syrup Urine Disorder Support Group Doree Marco