It’s all the rage these days, but in these parts not everyone tickled pink by it knows exactly what it’s all about—a campaign to raise awareness of the punishing disease amyotrophic lateral sclerosis (ALS) and donations to fund research to find a cure. The “ice bucket challenge” starts with a person pledging an amount for research toward curing ALS (aka Lou Gehrig’s Disease), followed by the pouring of a bucket of ice water on the person, and concluding with the soaking wet person nominating another to take up the experience. American celebrities from Lady Gaga to Mark Zuckerberg have famously risen to the challenge, raising more than $100 million for the ALS Association.
The challenge has crossed oceans and a slew of prominent Filipinos have jumped through the hoop, as it were, including government officials and show biz types. Many clearly understand the nature of the challenge, but others appear to be merely joining the trend, ignorant of the message and intent, with the splash being the point instead of the donation or the cause.
ALS is no joke. It is an aggressive, progressive degenerative disease that attacks nerve cells in the brain and spinal column, leading the muscles to atrophy, ultimately resulting in paralysis and eventual death. That ALS is unknown to most Filipinos does not mean it does not exist in our midst. It’s a disease the Malavegas of San Fernando, Romblon, for example, now know too well, having afflicted one of their own, fondly nicknamed Bonbon. “He was 21, but the doctor said he had the brain of a 78-year-old,” Gelyn Malavega, Bonbon’s mother, told Inquirer correspondent Maricar Cinco. Bonbon has since turned 22, and has been transformed from a healthy, handsome young man into a frail and helpless invalid. The Malavegas have struggled to provide medical care for Bonbon and are now deep in debt.
Environmentalist Rodne Galicha, a friend of the Malavegas, has uploaded videos on social media to apprise the public of the terrible disease. “While we are engrossed with the ALS ice bucket challenge, why not challenge our duty-bearers to address the struggles of our Filipino brothers and sisters who have been suffering this disease?” she said on Facebook. Indeed, why not? In a statement, Archbishop Socrates Villegas, president of the Catholic Bishops’ Conference of the Philippines, said: “It is … disturbing, to say the least, that some have trivialized the ‘ice bucket challenge’ by making of the act of dousing oneself with iced water a fad, rather than a gesture of solidarity with all who suffer from the disease and with those who do research on its alleviation.”
It would be helpful for advocates to steer the campaign to take on a local tone, to effectively reach more people and lead them to come to the aid of those in real need. This would be helpful not only for ALS sufferers but also for those afflicted by other grave diseases. One such disease is tuberculosis, which is apparently on the rise again: More than 60 Filipinos die every day from TB, the sixth deadliest disease in the Philippines. Surely, this cause also deserves the attention, to speak nothing of the donations. (Sen. Sonny Angara took part in the ice bucket challenge specifically to call attention to the so-called orphan disorders—health conditions that are life-threatening but affect only a tiny portion of the population.)
Or why not focus awareness on the nationwide immunization campaign for children now being conducted in the entire month of September? The Department of Health’s measles-rubella-polio mass vaccination campaign aims to cover at least 95 percent of the country—covering some 13 million children aged nine months to over five years, at risk of German measles and polio. Health centers are offering the vaccinations for free, and the DOH is considering setting up immunization centers in malls and calling on the military to assist health workers in conflict areas.
Many Filipinos are prepared to help, but they are largely unaware of where their assistance is most urgently needed and can be best used. For starters, they can help raise awareness of the grievous state of public hospitals nationwide. Let this worldwide ice bucket challenge serve us a wake-up splash concerning not only ALS but also the many medical problems plaguing Filipino children, the elderly, and the impoverished.