Senate President Franklin Drilon鈥檚 ice bucket challenge. Families of those afflicted with amyotrophic lateral sclerosis (ALS) and other rare diseases on Wednesday appealed to the Senate for the immediate passage of pending bills that will assure government funding and support for the research and treatment needed for their unique conditions. KIMBO MAGLAYA/黑料社 FILE PHOTO
MANILA, Philippines鈥揟hey need more than an ice bucket challenge.
Families of those afflicted with amyotrophic lateral sclerosis (ALS) and other rare diseases on Wednesday appealed to the Senate for the immediate passage of pending bills that will assure government funding and support for the research and treatment needed for their unique conditions.
Since the diseases are rare, treatment for these, if available, is often expensive, and the cost of providing for the special needs of the patients is often heavy as well, they told a Senate committee hearing on related bills.
Sen. Pia聽Cayetano, who chaired Wednesday鈥檚 hearing, has committed to support the measure, saying she has been considering putting more funds to the Department of Health for rare diseases.
No price tag on life聽
Juan聽Magdaraog, who has聽Pompe聽disease, a debilitating disorder that causes progressive muscle weakness, said that even if only few Filipinos have rare or orphan diseases, the government should still allocate funds for them.
鈥淲e can鈥檛 put a price tag on life. We can鈥檛 say let us forsake these children because their disease only affects a few. While it鈥檚 socially acceptable to spend millions on cars and things, then so should be spending money to save a life even if it鈥檚 just a few,鈥� said the 36-year-old, wheelchair-bound聽Magdaraog.
He said he was fortunate his family had the means to spend for his condition and send him to school, where he earned an industrial design degree. He now wants to give back, which was why he has taken up the advocacy of helping those with rare diseases.
鈥淣ot everyone is as lucky as I am. A lot of Filipinos suffering from rare diseases have modest means鈥� They can barely make ends meet, much less provide for the medical means to fight these dreaded diseases,鈥� he said.
Lack of support聽
ALS awareness advocate Leo Mallari said few people in the country were aware of what ALS is, which was why he took to social media to connect with other families supporting a person with ALS. Mallari鈥檚 own aunt has the condition.
According to him, the common problem of ALS patients is lack of support, not just financial, but moral support as well.
The disease has no known cure, but support for its sufferers will give them hope and the will to survive to prolong their lives, he added.
The ALS has been the subject of the ice bucket challenge, a social media drive that began in the United States to raise awareness about the degenerative nerve ailment also known as the Lou Gehrig鈥檚 disease.
As part of the challenge, participants get doused in cold water and post this on video, and dare others to do the same. People can choose to get doused in icy water or donate to an ALS charity, or do both.
Carmencita聽David-Padilla, director of the Institute of Human Genetics of the University of the Philippines Manila, said for some 200 patients, about P150 million a year is needed.