In an exclusive interview on DZRH TV's Expert’s Opinion, Dr. Loudella Castillo underscored the importance of awareness, education, and inclusivity in observance of Rare Disease Week.
During the interview, Dr. Castillo addressed common misconceptions surrounding rare diseases and emphasized the need for equitable access to healthcare, as well as stronger government support for affected individuals and their families.
She noted that the Philippines has begun making progress in this area. The Republic Act No. 10747, or the Rare Diseases Act of the Philippines, mandates the inclusion of genetic metabolic disorders in newborn screening programs, which are covered under the PhilHealth package. However, she stressed that PhilHealth should further expand its coverage to include comprehensive support packages for interventions and medications for patients diagnosed with rare diseases.
Dr. Castillo also highlighted Amyotrophic Lateral Sclerosis (ALS), the condition of actor Eric Dane, explaining that ALS is a motor neuron disease. She clarified that rare diseases are not limited to children, as adults can also develop such conditions.
As Dr. Castillo explained, like many rare disorders, ALS currently has no definitive cure. She also debunked the misconception that having a rare disease automatically means it is incurable. There are available treatments and medications that can help slow disease progression and improve quality of life.
She further cited the efforts of organizations such as the Philippine Society for Orphan Disorders, the National Institute of Health, and the Philippine Neurological Association, which continue to advocate for expanded legislation, broader inclusion of rare diseases in health policies, and the development of support packages for priority conditions with available treatments.
The Philippine Neurological Association has also established a rare disease interest group to promote awareness within the medical community. As Dr. Castillo stated, “Kasi ang mga doctors, we are trained to think first of common before the rare,” underscoring the need to strengthen awareness not only among neurologists and primary care physicians, but also among non-medical professionals, families, and the wider community.
