Advocates of Proposed Rare Diseases Act Appeal for President Aquino's Support

The Philippine Society for Orphan Disorders (PSOD) is appealing to the Aquino Administration to support the early enactment into law of the proposed "Rare Diseases Act of 2014" or Senate Bill No. 2098 authored by Senator Pia Cayetano.

In a roundtable discussion at the Max Restaurant in Jupiter St., Makati City, initiated on Wednesday by Mead Johnson Nutrition (Philippines) Inc., Cynthia K. Magdaraog, president of the PSOD, cited before media members and bloggers the call for the urgent and timely passage of the proposed law intended for individuals suffering from "rare diseases."

Rare disease is defined as any disease that affects a small percentage of the population. There are different types of rare diseases.

A disease is considered rare if it affects one in 20,000 individuals as defined by the Institute of Human Genetics of the National Institutes of Health, University of the PhilippinesManila.

No one can predict who can have it as it can only be known after birth through new born screening.

Based on a study, a combination of certain "not so good genes" can also result to rare disease of a child if one of the partners (husband/wife) is carrier of said genes.

There are about 6,000 to 8,000 rare diseases listed all over the world.

Magdaraog said that together with Mead Johnson Nutrition, they have sent a letter to President Benigno S. Aquino III to personally let him see the plight of people, like adult and children suffering from "rare disease" so that he could see for himself how difficult is the situation of the individuals who get it and how important is early intervention.

She noted that both the Senate and the House of Representatives have inputs about the bill and they are hoping that both versions will be reconciled and be passed before the end of President Aquino's term in 2016 as his lasting legacy among the individuals and families of those with rare disease.

"Hopefully, if the President will certify the bill as urgent or include it in the 'priority list,' he can pass on a lasting legacy among the sectors of persons with rare disease," she said.

According to Magdaraog, she herself has a son who is diagnosed with rare disease called "muscular dystrophy" (muscle diseases that weaken the musculoskeletal system and hamper locomotion).

She said that it is about time that those parents with children who have rare disease conditions be given attention since the budget that can be allocated for the implementation of the proposed law...