A leader of the House of Representatives on Wednesday urged the government to invest more in specialized training for Filipino doctors to allow them to effectively respond to the needs of rare disease patients all over the country.
Deputy speaker and Taguig Rep. Pia Cayetano issued the call as the country observes ‘National Rare Disease Week,’ which is slated every last week of February.
Rare diseases are special medical conditions that affect only a small percentage of the population. Medical services and medicines for these ailments are usually expensive, or hardly available and accessible, especially for the poor.
The principal author and sponsor of Republic Act 10747 or the Rare Diseases Act, Cayetano stressed the importance of addressing the needs of Filipinos diagnosed with rare diseases and giving them sufficient support.
“RA 10747 addresses the needs of a very special sector of our society,” the congresswoman said. “No matter how small this sector is, our health system must be responsive enough to include them. No one should be left behind in the delivery of health services.”
RA 10747 created a comprehensive policy that would assist individuals with rare diseases by increasing their access to medical treatment and medication.
The law mandates the Department of Health “to develop a system to train a sufficient number of medical specialists to diagnose and manage persons with rare disease.”
Cayetano called on the DOH and other concerned agencies to ensure the proper implementation of the measure, particularly by training and educating more Filipino doctors to diagnose rare diseases in patients as early as possible.
“There are so many different conditions and that’s why the registry, the background, and the early diagnosis for these children as mandated by the law are very important,” she added.
Once diagnosed with a rare disease, patients are given access to benefits from PhilHealth, including the cost of their treatment. They will also be considered as persons with disabilities and will be granted privileges such as priority programs and discounts mandated by law.
In filing the measure back in 2015, former senator Cayetano said she took inspiration from her own experience as a mother, having cared for and lost a child to a rare medical condition known as Trisomy 13.
“When I first ran for the Senate in 2004, I was espousing inclusive healthcare, inspired by the life of my father, who had liver cancer, and of my son, who died of a condition called Trisomy 13,” shared Cayetano, who is once again running for senator under the same platform of health, education, and the welfare of Filipino families.