Press Release - TRANSCRIPT: Sen. Pia Cayetano's privilege speech on Rare Disease Day

Mr. President, I rise on a matter of personal and collective privilege. March 3 is the Anniversary of the Rare Disease Act, which this representation principally authored and sponsored.

Presidential Proclamation 1989 (series of 2010) established the 4th Week of every February as National Rare Disease Week. The last day of February of every year is "Rare Disease Day".

What is a rare disease? The World Health Organization (WHO) defines a rare disease as an "often-debilitating disease or condition with a prevalence of 0.65% to 1%".

Our law, the Rare Disease Act of the Philippines, refers to it as disorders such as inherited metabolic disorders and other diseases with similar rare occurrences as recognized by the DOH upon recommendation of the NIH but excluding catastrophic (i.e., life threatening, seriously debilitating, or serious and chronic) forms of more frequently occurring diseases.

So in layman's term, Mr. President, rare nga siya. Bibihira siya. Kokonti lang ang may ganyang sakit and what happens is there is also very little research that allows them to find life-saving interventions, whether the intervention be food, kasi minsan it's just food, medicines, or other kinds of treatment. There are not enough pharmaceuticals or even other entities that invest in finding solutions for those who have rare diseases.

As of 2023, the Philippines has identified 156 conditions, or 1 in every 20,000 individuals.

I actually authored this Act, Mr. President. It's a 2016 Act, but again our honoree, Dra. Padilla, is really the brainchild behind this. It is very technical so she was the one who worked on this so that we would have a law that aims to improve the availability of comprehensive medical care for patients diagnosed with rare diseases.

I would like to mention, Mr. President, that we have with us a few of the patients of Dra. Padilla, but before I go there, let me ask that a video be played, it's a very short video of Juan Magdaraog, who is actually with us, to just say a few words about his condition.

Yes, Mr. President. That is Dickoy, who is over there. As described by Dr. Padilla, he is practically paralyzed all over, practically because obviously, he can