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Thursday, September 11, 2014

Ice Buckets and Ebola

by Abdulrahman M. El-Sayed

NEW YORK – The “Ice Bucket Challenge” was the feel-good health story of the summer. YouTube videos of friends, family, and co-workers emptying buckets of ice-cold water over their heads has raised awareness, and millions of dollars in funding, for research on amyotrophic lateral sclerosis. ALS is a degenerative neuromuscular disease that robs thousands of people worldwide of active control of their muscles, making them prisoners in their own bodies. Research on ALS should be well funded, and the campaign appears to show the public’s readiness to fight for anything that might save lives.

Or does it? The contrast between the Ice Bucket Challenge and this summer’s other major health story, the worst Ebola outbreak in recorded history, could not be more striking. While thousands of Americans soak themselves to benefit ALS research, Ebola has become a public-health catastrophe in West Africa, one of the world’s poorest regions. The virus kills up to 90% of its victims by interrupting the blood’s natural ability to clot, causing terrible bleeding and shutting down vital organs. As with ALS, there is no tried and tested way to prevent or treat the disease.

In just a few weeks, Ebola has infected 3,707 men, women, and children, so far killing 1,848. The World Health Organization (WHO) predicts that the disease could infect 20,000 people before it is controlled. Although far more than 20,000 people worldwide have ALS – from which many will die – the highly infectious Ebola virus is different, because it can wipe out entire communities.

Preventing Ebola’s spread involves painstaking tracking and quarantining of high-risk individuals. But doing so is often impossible owing to lack of funds, manpower, and infrastructure, requiring the military to quarantine entire neighborhoods. Moreover, the virus has claimed the lives of many doctors trying to treat victims, and forced the closure of hospitals that were unable to contain the virus.

The impact on struggling economies has been devastating. For example, in Liberia’s capital, Monrovia, the price of Cassava, a dietary staple, has soared by 150%, along with price rises of other basic foods. As a result, even after the epidemic has passed, survivors will continue to struggle.

This raises a simple question: Why have so many people – first in the United States, and then around the world – seemed so eager to support ALS research while ignoring a far more urgent public-health (if not humanitarian) crisis. Part of the answer is that the Ice Bucket Challenge has given an esoteric disease a human face. People increasingly identify with the fight against ALS through the entertaining video recordings of friends and relatives. By contrast, the Western media has portrayed Ebola as yet another in a long list of tragic, African diseases that has little impact elsewhere.

But there is another, perhaps more disturbing, explanation. Ebola’s main victims – poor, black, African – are part of a demographic that, to put it mildly, is of little interest to mainstream America. Consider, for example, the different perspective on August’s protests in Ferguson, Missouri, which followed the police shooting of a young, unarmed black man. Surveys reveal that 80% of African-Americans thought the issue had raised important questions about race in the United States; only 44% of whites agreed.

So it should not be surprising that the $110 million that the Ice Bucket Challenge has already raised for ALS is almost 50% more than the US government has committed to fighting Ebola, despite public-health leaders’ pleas for funds. Maybe the ALS Association, which sponsored the Ice Bucket Challenge, would consider allocating a proportion of its money to help the effort to end the Ebola epidemic. Such a move would be unprecedented, but desperate times call for desperate measures.

ALS fundraisers may celebrate the fact that their campaign has “gone viral.” For Ebola sufferers, that very modern phrase carries a different, more traditional meaning. As the ice-bucket craze spread across Facebook and Twitter, Ebola began ravaging swaths of West Africa village by village. If these communities also had access to ice and the Internet, they, too, might start their own challenge. Until then, they must rely on the demonstrated humanity of others.