Health experts said a unified national registry for rare diseases within the Philippines will raise more awareness and support for Filipinos diagnosed with rare conditions.
“The policy makers don’t have [data] that points to what we want. They will determine higher, they will craft policies higher in the event that they get a greater landscape of what rare conditions are,” pediatrician and clinical geneticist Maria Melanie Liberty B. Alcausin told BusinessWorld in an interview on Thursday.
“If there’s no registry, there’s no data. Without data, there’s no policy, so the registry is admittedly essential; that’s why it’s at the highest of our concern,” she added.
The dearth of centralized data on rare diseases within the Philippines resulted in medical societies storing records individually.
“For instance, I actually have a registry of my very own patients with osteogenesis imperfecta because we’re the one ones who can manage it,” she said. “But, it shouldn’t be like that. The registry ought to be unified, and straight away, we don’t have that.”
Loudella Calotes-Castillo, a baby neurologist and neuromuscular specialist, echoed the identical concern, underscoring how this gap could further isolate patients with rare diseases.
“Rare diseases are usually not at all times the primary disease that doctors or medical professionals consider,” she told BusinessWorld on the sidelines of an event. “As you realize, a few of these rare diseases may be tagged as infectious, so that they usually tend to be stigmatized by the community.”
“One in all the gaps is identifying who the patients with rare diseases are and tips on how to cover for them? Because each system… are covering rare diseases,” she added.
On a world scale, Rare Diseases International found that 300 million people live with such conditions, and over 7,000 kinds of diseases fall under this category.
The group also noted that individuals with rare diseases often face financial burden brought by hospital bills and coverings.
To further support Filipinos diagnosed with such conditions, the Philippine Health Insurance Corp. (PhilHealth) also goals to expand its Z-benefits to 10 rare genetic diseases this yr.
The conditions covered by the advantages are Maple Syrup Urine Disease, Methylmalonic Acidemia/Propionic Acidemia, Galactosemia, Phenylketonuria, Gaucher Disease, Pompe Disease, Fabry Disease, MPS II (Hunter Syndrome), MPS IV (Morquio Syndrome), and Osteogenesis Imperfecta.
“They are only polishing those ten, and what processes are involved, because there are more diagnostics and consultations because it’s a genetic condition,” Ms. Alcausin said.
“So there are a number of processes, it’s very complicated, but a minimum of you’re making some headway,” she added. — Almira Louise S. Martinez