Ice bucket dare not enough vs ALS, rare diseases

Ice bucket dare not enough vs ALS, other rare ailments
By Leila B. Salaverria
Reposted from the Philippine Daily Inquirer
11 September 2014

They 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 Cayetano, who chaired Wednesday’s 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
Juan Magdaraog, who has Pompe 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.

“We can’t put a price tag on life. We can’t say let us forsake these children because their disease only affects a few. While it’s socially acceptable to spend millions on cars and things, then so should be spending money to save a life even if it’s just a few,” said the 36-year-old, wheelchair-bound 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.

“Not everyone is as lucky as I am. A lot of Filipinos suffering from rare diseases have modest means… They can barely make ends meet, much less provide for the medical means to fight these dreaded diseases,” he said.

Lack of support
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’s 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’s 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 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. #

READ: Senator Pia Cayetano’s Senate Bill No.2098, proposed ‘Rare Disease Act’

PHOTO: Sen. Pia S. Cayetano talks to children under the care of the Philippinse Society for Orphan Disorders (PSOD) following Wednesday’s Senate hearing on the proposed ‘Rare Diesase Act.’

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