The Ice Bucket Challenge: How Can We Really Cure ALS?

The “Ice Bucket Challenge” has gone certifiably viral. Countless videos showing people dousing themselves with buckets of ice water have flooded social media. Everyone from GW Bush to Will Smith to Britney Spears to your next-door neighbor to half your High School classmates are joining in the late-summer antics and nominating someone else to do it. If the challenge is not met within 24 hours, the nominee is supposed to donate to the ALS Association. Some people donate no matter what. Others donate to non-ALS charities. Others just want to have a bit of fun. In theory, this is all being done to “raise awareness about ALS.” As a result of this campaign, an estimated 740,000 people have donated $42 million to the ALS Association since June 29. But what does it all mean? Is “raising awareness” enough? Do most people even know what ALS is? Is this really a way to “create a world without ALS”?

[This article was first published in Socialist Appeal (USA)]

What is ALS?

ALS stands for Amyotrophic lateral sclerosis, and used to be more popularly known as “Lou Gehrig's Disease,” after the outstanding New York Yankee baseball player. According to Wikipedia: “[ALS] is a neurodegenerative disease with various causes. It is characterized by muscle spasticity, rapidly progressive weakness due to muscle atrophy, and difficulty in speaking (dysarthria), swallowing (dysphagia), and breathing (dyspnea). ALS is the most common of the five motor neuron diseases. One of the famous victims of this disease is Stephen Hawking.”

According to the ALS Association, “ALS is not contagious. It is estimated that ALS is responsible for nearly two deaths per hundred thousand population annually. Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time. Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.”

World poverty and disease by the numbers

Only someone devoid of empathy would want to see anyone suffer from any of the thousands of diseases that continue to afflict humanity. A cure, treatment, or preventative measure for ALS can and must certainly be found. But let’s put things into context. Worldwide, in 2012, 8.5 million people died from ischaemic and hypertensive heart disease; 6.7 million from strokes; 3.1 million from chronic obstructive pulmonary disease (COPD); 3.1 million from lower respiratory infections; 1.6 million from trachea/bronchus/lung cancer; 1.5 million from HIV/AIDS; 1.5 million from diarrhea; 1.5 million from diabetes; 1.3 million from road accidents; and 627,000 from malaria, out of 207 million clinical episodes of that disease.

Much of this suffering is due to a lack of basic health care and infrastructure, clean water, sanitation and sewage systems, soap, electricity, cooking fuel, education, literacy, knowledge of basic hygiene, access to healthy food and well-ventilated, uncrowded living conditions. Considering that nearly half the world’s population—2.8 billion people—live on less than $2 a day, it would take relatively little to lift hundreds of millions of people out of this nightmare of squalor and misery. So why haven’t these problems been eliminated?

The US often tops the list of “most charitable nation in the world”—even in the depths of the ongoing Great Recession. The fact that hundreds of thousands of individuals have undergone the ice bucket challenge and donated to the ALS Association is proof that, contrary to popular belief, Americans are not all “greedy” and “out for #1.” Like all workers, American workers want a basic level of comfort, safety, and quality of life for their friends and families, and are willing to share what little they have with others if they think it can make a difference. This gives lie to the myth that the idea of socialism—collectively pooling the resources of humanity to ensure a high quality of life for everyone—is somehow “un-American.”

Putting their money where their mouths are, millions of Americans have given billions over the decades to worthy causes such as eliminating homelessness, feeding starving children, and finding a cure for breast cancer. Nonetheless, these problems still plague society. Whether we want to accept or not, the proof of the pudding is in the eating, and charitable giving has done very little to actually improve things. To seriously tackle serious problems, serious resources are required—not the already strained and limited resources of ordinary workers.

So again, let’s put things into context. It is estimated that world hunger could be wiped out with just $30 billion per year, while US Fortune 500 companies alone have $2 trillion in uninvested cash assets sitting in US banks, and another $2 trillion or more squirreled away in offshore accounts. And according to economist Jeffrey Sachs, extreme poverty worldwide could be eliminated with just $175 billion per year over 20 years, while world military spending amounts to a mind-boggling $1.75 trillion each and every year.

Of course, from a Marxist perspective, these abstract schemes to eliminate poverty and hunger within the limits of capitalism are utopian. Only on the basis of a rationally and democratically planned socialist world economy can we hope to achieve real progress in ending these problems. They cannot be solved in isolation from broader questions such as who owns the key levers of the economy and who controls the state, not to mention the question of jobs, health care, education, housing, and infrastructure. However, these figures do show the potential that exists to seriously address these problems, not through a trickle of private donations to private organizations, but by harnessing the enormous collective potential of the US and world economies.

Funding research, austerity, and the “non-profits”

As just one example of the “economy-of-scale” potential of state-sponsored funding, consider that in 2007, even after decades in cuts to federal programs, the National Institute of Health (NIH) spent $30 billion on medical research, as compared to the $5 billion raised that year through private philanthropy. Just imagine the potential when the working class majority has the political and economic power in its hands!

The crisis of capitalism has led to austerity and cuts and there is no end in sight. Along with draconian cuts to food stamps—to the tune of $8.7 billion over ten years—other programs that directly affect public health and well-being, such as research into diseases like ALS, have been slashed. For example, in 2010, the NIH spent $59 million on ALS research. This has now been cut by one-third. Overall, the NIH budget has declined by 25% over the last decade, and only 16% of research applications are funded, compared to 30% 10 years ago.

Asking for charitable contributions from individuals to cover yawning gaps in public funding is yet another example of how the burden of the capitalist crisis being put on the shoulders of the workers and poor, while CEO salaries and corporate profits skyrocket to new records.

So while we hate to throw cold water on the genuine enthusiasm to find a cure for ALS, the harsh reality is that even the $42 million dollars raised by the “Ice Bucket Challenge” is just a drop in the bucket. According to Dr. Jonathan Serody of the University of North Carolina, private donations can in no way make up for the cuts in government funding. Without a significant, dependable, and steady source of funding over a period of several decades, even a $100 donation from an individual is just a “flash in the pan” and “does little to support” the research needed.

And just where does the money donated to the ALS Association go? A quick look at the nonprofit’s financial statement is revealing. In its most recent fiscal year, 2013–14, only 27% of its revenue was spent on actual research into ALS. In 2012, they spent only 7% on research. Incredibly, in fiscal year 2013, when they spent just 12% on research, nearly $2 million went to the six-figure salaries of just 11 employees, including a whopping $339,475.00 for president Jane H. Gilbert. This means that if 100,000 people each donated $20 of their hard-earned money to the ALS Association, it would barely cover the pay packages of the top 11 executives, to which must be added pensions, health benefits, and other perks! Another $1.3 million was spent on “travel” and $1 million went to “lobbying.” This is the real face of many of the larger so-called “nonprofits,” which prey on people’s goodwill in order to enrich a handful of professional scam artists.

How can we actually cure ALS?

The question of finding a cure for ALS and other diseases is intimately connected to the general state of US health care and the broader economy. As long as our lives are dominated by a profit-motivated economic system, profits will always come before human needs. The mega pharmaceutical, medical, and health services corporations, as well as the major universities, all compete with each other in an irrational and inefficient manner. Instead of pooling their resources for the more efficient betterment of the human species, they spend billions on armies of patent and malpractice lawyers, advertising and marketing, and individual research and development departments. Instead of focusing on finding a cure for deadly but unprofitable diseases like malaria or HIV/AIDS, they spend enormous amounts on money-makers like Viagra and hair loss treatments.

Compare the status quo to what we in the Workers International League (the US section of the International Marxist Tendency) fight for:

“Universal quality health care—For a socialized, national health care system. Free scientific research from the profit motive. Full access for all to the latest medical technology, treatments, and discoveries. Massively fund research for cures and treatment of AIDS, cancer, and other diseases. Nationalize the health insurance companies, the medical equipment and pharmaceutical industries, the mega-hospital systems and related clinics, and integrate them into a single state-owned and democratically managed and administered health provider.”

Only through such a rational approach to health care, integrated into a broader planned economy, can we effectively harness the energy, creativity, and genuine will to “make the world a better place” of the world’s doctors, nurses, researchers, hospital staff, first responders, universities, and the vast majority of humans.

The Marxists are told by many that this is utopian. With all due respect to those who with the deepest sincerity want to “do something” about ALS and have made sacrifices to donate to charity, the real utopia is to imagine that the world’s literal and figurative ills can be cured by private foundations, gimmicks, and celebrities dumping ice on their heads. “Awareness-raising” is certainly important. But the most important awareness that must be raised is the fact that capitalism is an impediment to the future advancement—and to the very survival—of the human species.

This is not to say that socialism will automatically rid the world of its problems. It will take time; a collective and democratic process over years and even decades to rid ourselves of the scars and vestiges of the barbarism of class society. But at least the potential to seriously address and resolve these problems will be laid.

The buzz around the ice bucket challenge shows that millions of people sincerely want to “do something.” Unfortunately, if we truly want to change the world, it is not enough just to do “something.” We need a fundamental transformation of society, and this will not come about quickly or easily. Though the Marxists have a healthy sense of humor, we also have a sense of proportion, and we understand that such change is not going to come about by dumping buckets of ice water on our heads or making charitable donations. To make this a reality, the working class requires the far less romantic but infinitely more useful tools of a scientific socialist program, and a revolutionary organization, armed with Marxist ideas and rooted in the labor movement and the youth.

So whether you are doing the “Ice Bucket Challenge” or not, why not consider donating to a cause that can make a real impact on the quality of life of future generations? Why not make a one-time or recurring monthly donation to further the work of the WIL and the IMT? Why not subscribe to Socialist Appeal magazine or buy a book or booklet from MarxistBooks.com and learn more about these ideas?  Or better yet, join the Workers International League and fight with us for a socialist future in the US and around the world!

Unless and until the root problem is addressed—a system in which vast economic and political power is concentrated and squandered in the hands of a tiny minority of society—there will be no end to the problems humanity faces. As long as we set ourselves limited targets, we'll achieve limited results. Despite the pundits’ efforts to atomize and demoralize us with the alleged hopelessness of the situation, the Marxists believe that collective humanity can do better—much better. So let's set the bar higher—far higher!