BAGUIO CITY (PIA) — The Department of Health-Cordillera calls for whole-of-nation approach in addressing the challenges of rare disease as the country observes National Rare Disease Week (NRDW) in the last week of February.
Dr. Mary Erika Orteza of the Baguio General Hospital and Medical Center, Orteza stressed the need for the government, health care professionals, parents, civil society and the academe to work together to heighten public awareness about the rare diseases.
Orteza said there is no single, unified and universally accepted definition of rare disease.
The World Health Organization describes rare disease as as often debilitating (making someone very weak and infirm) or even life threatening with a prevalence rate of 6.5-10 persons per 10,000 population.
Worldwide, there were 7,000 rare diseases that have been identified and 159 are listed in the Philippines
There are around 470 million affected by rare disease around the world and around 1 in every 20,000 population in the Philippines, she said.
“Rare disease is not easily diagnosed; incorrectly treated, in some cases undergo unnecessary surgery. 75 percent of patients afflicted with rare disease are children and it is responsible for 35 percent of deaths in the first five years of life of children,” according to Orteza.
The designated rare diseases in the country include Gaucher Disease, Maple Syrup Urine Disease, Pompe Disease, Galactosemia, Phynelketonuria, Methylmalonic Acidemia, Urea Cycle Defects, Hurler Syndrome, Hunter Syndrome, Prader-Willi Syndrome and Lubag.
Orteza said the challenges rare disease patients are encountering include lack of awareness and education on rare disease, economic impact of diagnosis and management; accessibility, availability and affordability of medicines and treatment, limited availability of health experts and management guidelines, and major emotional toll and isolation.
To help patients cope with the impact of rare diseases, the late President Benigno Aquino Jr. signed in 2016 Republic Act 10747 or the “Rare Disease Act of the Philippines” promulgating a comprehensive policy for early diagnosis, treatment, and management of rare diseases.
Rare diseases are already covered by the Philhealth.
“Included na po sa Z benefit package ng PhilHealth the 10 rare diseases po, including Maple Syrup Urine Disease , Methylmalonic Acidemia or Propionic Acidemia , Galactosemia , Phenylketonuria, yang mga conditions na yan nadi-detect sa newborn screening; Gaucher Disease, Pompe Disease, Fabry disease, Hunter Syndrome, Moroquio Syndrome, sila po ay mga storage disorder, and Osteogenesis Imperfecta or little bone Disease,” she said.
She stressed that “together we can bring awareness to diseases, stories and communities, beyond what we can imagine.”
Orteza was one of the guests in the DOH CAR -led Kapihan sa Baguio to promote the health observances for the month of February.
The last week of February was declared by President Gloria Macapagal Arroyo 1989 as National Rare Disease Week to “create awareness about the nature and medical management of rare diseases; and instill awareness among the public about rare diseases to generate full support for the special needs.” (JDP/CCD with Ariann Mangayabas/PIA-BSU Intern)
