My (Ice) Bucket List

“… And up through the ground come a bubblin’ crude.”

Like Jed Clampett of “Beverly Hillbillies” fame, the ALS Association in 2014 found itself in the unexpected circumstance of commanding assets beyond its wildest dreams. The national display of generosity, hope, and compassion dubbed the ice bucket challenge dropped the lion’s share of donations — about $115 million — into the association’s lap. That, per Market Watch, is an unprecedented surge of money for a U.S. nonprofit. That’s the good news.

Now for some bad. I suspect that the majority of ice bucket donors did the challenge in support of a person living with ALS. Naturally, donors were drawn to the notion of rapid advancement toward a meaningful treatment, and ideally, a cure for ALS.

That dream hasn’t happened. As a result, the nonprofit has come under scrutiny and criticism regarding the disbursement of its share of the proceeds. In 2015, prompted by concerns regarding the seemingly less-than-urgent assignment of ice bucket challenge money, I wrote ALS Association Chief Scientist Lucie Bruijn, PhD, with the objective of understanding an announced allocation of partial proceeds from the fund. What follows are her answers (italicized) to two of my questions at the time:

How can any of the 58 research grants receive impactful funding (at less than $200,000 per grant)?

“Our strategy is to invest in multiple projects in the hope that a few will yield significant results and we can further invest in those that show the most promise. Investing all the money in only a handful of projects may result in nothing to show for our investment.”

Why is the aggregate amount committed to research only 67 percent?

“We believe that the best way to expedite treatments is through research, public policy and care services. For example, our public policy program moves forward legislative and regulatory priorities to benefit people living with the disease AND secure additional research funding from the government (which is the largest funder of ALS research). And our Care Services program helps care for people living with the disease, encouraging participation in clinical trials (where a treatment will be found). Together, with research, this integrated approach is essential to creating [a] world without ALS.”

A quick look at the association’s financial statements confirms the measured approach that Dr. Bruijn described. The association’s fiscal year ends on Jan. 31. For FY 2014, it had $20.4 million in net assets on hand at year’s end. For FY 2015, courtesy of the ice bucket challenge, it finished with almost $119.8 million. At the close of FY 2018, it reported about $96.5 million.

So, it has been spending money. In fact, it is doing so at an accelerated pace.

During FY 2014, it spent about $7.2 million on research, plus about $8.5 million on patient and community services and public and professional education. In the three fiscal years since the ice bucket challenge infusion, the average annual investment in research has been $17.8 million (up 148 percent), and for patient services and education, $11.8 million (up 39 percent). Last January, about $16.5 million was committed to research grants through 2023. Additionally, about $84.3 million was tied up in marketable securities (more on that later).

The association’s website also has a listing of its challenge-related research spending. Even a casual skim yields a reminder of the “needle in a haystack” reality of solving the ALS riddle. In hindsight, had the association aggressively depleted funding on only a couple promising therapies du jour, the money would be gone — with no return.

Given that, the ALS Association’s stewardship of the ice bucket challenge windfall was prudent, although I’d still offer it two pieces of advice. First, I’d broaden its mission statement (emphasis mine): “To discover treatments and a cure for ALS ensuring delivery to all sufferers …”

The 2017 approval of Radicava (edaravone) offered a cautionary, predictive lesson in patient access. Some insurance companies made it difficult for patients to get the medication covered. Calaneet Balas, the association’s president and CEO, said, “What they’ve done, for the most part, is to use the inclusion criteria for the clinical trial as criteria for qualifying [patients] for the drug, which is incredibly narrow.”

For example, if the disease duration has extended past two years, a patient could be denied coverage. Balas said that “easily excludes 75 to 80 percent of all ALS patients.”

That leads to my second suggestion for the association, involving the aforementioned marketable securities. Leave a significant amount in abeyance. Specifically, earmark it for any insurance gaps or copayment and coinsurance challenges that ALS patients might face.

Whether through brilliant research or a random discovery, a cure will be found. Let’s not make the distribution of the remedy as daunting as identifying the means to arrest ALS.

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