The Ice Bucket Challenge and Funding of ALS Biomedical Research: A Drop in the Bucket

By John Leavitt, Ph.D., Nerac Analyst and Stephen Buxser, Ph.D., Nerac Analyst 

Originally published August 21, 2014

For the past week we have seen a lot of giddy newscasters drench themselves with ice water eliciting cries of delight and laughter among their colleagues. Raising $31.5 million for ALS research is nothing to shake a stick at and this effort should be encouraged. But curing a complex, not well understood neurological disease like ALS (amyotrophic lateral sclerosis) will take decades of advanced research and new technological developments that haven’t happened yet. Vaccines have saved 100s of millions of lives but neurological diseases are not likely to be treatable with a vaccine. Blocking of poliovirus, for example, requires only one single antibody species from our immune system that binds the virus at its site of attachment to our cells and this is why the vaccine works so well.

The founder of the Ice Bucket Challenge recently opined about the fact that it has been 75 years since Lou Gehrig disclosed that he had ALS and yet “we are no closer to a cure.” This is an incredible point of view that reveals a degree of ignorance about this disease and the complexity of the brain. This reminds me of President Nixon’s war on cancer which was to be conquered in 10 years … sort of like President Kennedy’s goal of landing on the moon by the end of his decade. Kennedy’s goal was achieved because all of the science was known to achieve that goal. In the case of Nixon’s goal there was little understanding of the mechanism of cancer that would lead to a cure and even less was known at that time about neurodegenerative diseases that would lead to a cure for diseases such as Alzheimer’s, Parkinson’s, and Huntington’s Disease … and ALS.

Nixon created the Frederick Cancer Research Center in rural Maryland, next to Fort Dietrich which eventually was quietly annexed to the larger National Cancer Institute (NCI). By the end of the 1970s the United States Congress was holding hearings to try to explain why little progress had been made toward “curing” cancer. A leading NCI scientist, Bob Gallo was banking on a cancer-causing retrovirus and others were banking on a newly discovered oncogene. Now here we are 34 years after those hearings; while progress has been made in treating many forms of cancer, rarely has cancer been “cured” with exception to a low percentage of “complete” remissions of more benign tumors, their unexplained disappearance and/or “miraculous” remissions by faith healers. The situation is even more dire for idiopathic pulmonary fibrosis that kills the afflicted 2-3 years after diagnosis.

Currently there are approximately 440 funded NIH grants that relate to ALS (from the NIH Reporter). There is one drug that is marketed for treatment of ALS and about 25 new drugs in various stages of development for ALS as well as for other neurological indications. It is likely that bringing any truly effective drug to market will cost a billion dollars by present day costs. If it is true that NIH spent $59 million in 2010 in funding for ALS research, then you have to multiply this number by 10 to 20 years to sustain the current directions ALS investigators are pursuing. This requires extended funding of approximately $0.5 to $1 billion in ALS research. This doesn’t include the funding of brain research proposed by President Obama, a 12-year initiative budgeted for $54.5 billion. Obama’s initiative makes a lot of sense given the problems the country and world are facing with the rising prevalence of neurological disorders and a growing aging population.

How many Ice Bucket Challenges will this require?

It is a well-established, if largely unrecognized fact, that medical research requires sustained and high-level funding. Although supplemental funding by initiatives like the Ice Bucket Challenge are important for raising awareness in some areas of medical research, by far, the most important and absolutely necessary bulk of funding needs to be obtained from the ultimate crowd-sourcing, i.e. tax dollars. As difficult as approving even existing taxes has become, we have obviously lost sight of the fact that this is the only way conceived by modern man to address such large-scale and common issues as advancing medical research. Loss of this vision is made at our imminent and long-term peril and the peril of our children, grandchildren and all future generations. This is the cost of glitzy 30-second sound bytes.



  1. says

    After this article was posted certain national and state politicians running for office this year took the Ice Bucket Challenge. Some of these multi-millionaire politicians have advocated drastic cuts in funding for biomedical research eliminating billions in the NIH budget. I would like to see their opponents speak out about this hypocrisy just to gain a vote.