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Jonathan Klate: Left cold by ice bucket challenge



Tuesday, September 02, 2014
NORTHAMPTON — Essay: What we did on our summer vacations.

… The nation’s smoldering seams of inequality, injustice, unequal treatment under the law and unresolved racism roiling our society-in-denial violently erupted, again.

… Methane vents are fracturing the northern regions as the polar ice vanishes and the tundra thaws, giving wings to the galloping dragon of catastrophic climate change.

… Gaza City, comprising about the same area as Northampton but the most densely populated place on Earth, has absorbed bombardment comparable to the explosive tonnage of the Hiroshima atomic bomb, destroying 17,000 homes and leaving 100,000 homeless. At least 600 of the slaughtered are children. The entire U.S. Congress and many friends and family agree that every bit of this assault is nobly justified.

… ISIS, armed with tens of billions of dollars of mostly U.S. made weaponry, is on the rampage. Syrian President Assad, declared a horrible tyrant by the U.S. government a year ago, is now a U.S. ally in the incipient war against this monstrous force.

… The epic exodus of child refugees from grinding poverty, violence and hopelessness in Guatemala, Honduras and El Salvador is demagoged in Texas.

…E bola, untreatable and hideously deadly, is decimating regions of west Africa, and on the move.

… We anticipate the impending impeachment of our first African-American president if Republicans increase their nearly all-white Congressional majority and claim the Senate.

… And, our brilliant national jester, Robin Williams, has left us just when we could use a pithy laugh.

And what is the activism that has burgeoned across this riven landscape? Dumping pails of ice water on our heads!

The mass distraction of the “bucket challenge” is whimsical, and we could sorely use a bucket of ice water dumped on our heads to help shock us out of our stupor.

ALS is the focus of this effort and the awful disease merits attention and research into causation, prevention and treatment. This world would be a far kinder, gentler and more just place with more people like my mother-in-law, Sylvia Willis in it. ALS killed her after a struggle of heroic grace. In response to the bucket thing we donated to the Massachusetts ALS Association hoping to help stricken local folks receive care.

Yet watching billionaire celebrities like Oprah Winfrey, Steven Spielberg and George Lucas — and, more dreadfully, George W. Bush — entertain us with videos dousing themselves while encouraging us to donate money for ALS research leaves me rather chilled.

These notables and their fellow aristocrats could individually or collectively write checks greater than the total so far donated by this Facebookathon with no greater pinch to their purses than an off-day in the stock market.

And they could advocate for raising taxes on their own cohort to pay for research far more substantially and sustainably than this silly viral fundraising game will accrue to the national ALS Association.

They could leverage their fame and fortune to remove barriers to voting so we could cultivate a truly broad-based democracy and get a government of all the people that would collectively fund research far more meaningfully than random social media stunts and develop treatments that would then be made available to everyone who needs them.

Instead, budget pressures force the National Institutes of Health to reject half of all promising research proposals. NIH director Francis Collins says that, “While the scientific opportunities have never been more exciting than right now, the stress on the biomedical community in the United States has never been more severe.” Scientific progress pursued with collective investment for the benefit of all is sacrificed on the altar of corporate profit for the financial benefit of stockholders and the health benefit of the privileged.

Witness: At long bloody last, we have an effective treatment for Hepatitis C. The three-month course of Sofosbuvir (also known as Sovaldi) cures up to 90 percent of patients.

Gilead Sciences Inc., the developer of the drug, which costs about a thousand bucks a pill, had summer sales soaring into multiple billions of dollars. Desperate American patients are having to fight for it.

In spite of the greed of the for-profit insurers who are whining about the cost, they do have a point on this one. As many as 3.2 million Americans are infected by HepC, and the cost of giving most of them Sovaldi at current market costs would surpass $200 billion. Insurers haven’t recently had to face such a highly effective drug aimed at a widespread disease and, being in the business of making as much money as they can, as distinguished from helping people access health care, this is a tough one for them. So, of course, they are rationing access.

In England it is available to every one of the hundreds of thousands of people with HepC in that country as fast as possible with a mission to wipe the disease out of their society.

After you put down your ice bucket, be sure you are registered to vote.

Jonathan Klate of Amherst writes about spirituality and political perspectives. His column appears the first Monday of the month. He can be reached at opinion@gazettenet.com.