PGH awaits IRR on rare disease law

Philippine General Hospital (Photo by Faisal Hermogeno Jackarain – Own work, CC BY-SA 3.0)

MANILA — The Philippine General Hospital (PGH), together with the National Institutes of Health (NIH) and the Philippine Society for Orphan Disorders (PSOD), expressed hope that the Department of Health would soon complete the Implementing Rules and Regulations (IRR) for Republic Act No. 10747 or the law on rare diseases that was passed in March last year.

“It is a continuous campaign, that is why we pushed for the law.

Now we are waiting for the IRR to be signed by the Secretary of Health,” Dr. Carmencita Padilla, Chancellor of the University of the Philippines (UP) Manila, said Wednesday.

During a media briefing to promote stronger public awareness of rare diseases, Padilla recalled that difficulties in the diagnosis and treatment of rare diseases, along with the unavailability of medicines for such illnesses in local drugstores, including generic drug pharmacies, had made them push for the passage of the Rare Disease Act.

“(These medicines) have to be ordered specifically for patients and have to be given by specialized doctors,” she said.

The law, which was passed after more than eight years of lobbying, is aimed at producing a comprehensive policy on how to address the needs of persons with rare diseases through early intervention to increase their rate of survival, Padilla said.

“We are looking forward to the implementation of the law because it will ensure that budget will be allocated to rare disease programs.This law gives us hope in making sure that people with rare diseases are given a chance of life,” said Cynthia Magdaraob, president of PSOD and parent of a patient with Pompe disease, a rare neuromuscular disorder that is hereditary.

“For our patients who are suffering from rare diseases, this is a welcome development,” said PGH director, Dr. Gerardo Legaspi.

Legaspi said the law, once fully implemented, would provide some form of rescue for rare disease patients and help alleviate the burden of costs borne by their families, who usually seek assistance from private donors.

While waiting for the IRR, he said the PGH is training physicians from 14 general hospitals across the country on handling patients with rare diseases.

Angelita Obeda, whose sons are suffering from Hunter syndrome, a very rare, inherited genetic disorder caused by a missing or malfunctioning enzyme, said the law would be a big help to patients with rare diseases and their families.

“Syempre masaya. May pag-asa dahil mahal ang gamot. Kumbaga mayroon nang siguradong tulong sa amin na mga magulang ng pasyenteng may rare disease (We are of course happy there is such a law. It gives us hope. It will assure help to parents of patients with rare diseases as their medicines are very costly),” Obeda added.

In the Philippines, a disease is considered rare if its affects one in every 20,000 individuals or less.

Meanwhile, to raise public awareness on rare diseases, the PGH, with the PSOD, mounted an exhibit that will run for one month.

Several booths have been set up at the hospital lobby where information materials are distributed. (PNA)