It's Time We Crowd-Fund Disease Cures

The newly released report by Science Magazine earlier this month has detailed the wide successes of last summer's "Ice Bucket Challenge"  --  that addictive viral campaign in which the participant dumped -- well, a bucket of ice water on their head. It was done all in the name of good, and all in the name of charity for ALS, the destructive and debilitating disease more commonly referred to as Lou Gehrig's Disease.

After the report was released, Jonathan Ling, the author of the report and a researcher at Johns Hopkins, did a Reddit AMA to answer questions about the findings. And just what did researched find? A lot, apparently.

Aside from the challenge raising more than $115 million in just a few months for the ALS Association, it seems, as Ling pointed out in the AMA, that the sudden flood of money was "amazingly helpful and we have been working tirelessly to find a cure."

Ling pointed out that "there's a lot of hope and optimism now for real, meaningful therapies," and that a new clinical trial, specifically focusing on a TPD-43 -- a healthy protein needed for proper cell function-- could be "two to three years away."

The internet was surprised in the report's findings and in Ling's Q&A. But you shouldn't be surprised. I wasn't surprised.


If you have one of these diseases -- any disease, really --  waiting for that medical breakthrough seemingly never comes, right? I'm sure you've often said to yourself, "Where the fuck is all of the money going to?" And as a cancer survivor, I know the frustration in dumping money into a cause and seeing very little aside from clinical trials that take five years or the promise of an extra six years of life.

One of the cornerstones of cancer research is Boston's Dana-Farber Cancer Institute; a place that I've visited many times. Since its founding in 1948, The Jimmy Fund , DFCI's fundraising arm, has raised over $750 million. Three-quarters of a billion dollars. The Jimmy Fund does a lot of good. A lot. And DFCI is recognized as one of the best oncology and cancer centers in the world. DFCI's early success was in advancements with chemotherapy drugs, screenings and oncology research. Yet, cancer is still the second-leading cause of death among both African-Americans and whites in this country.

These frustrations stem from the fact that few diseases, and to be more specific, fewer cancers have actually been cured. Hodgkin's Disease, the good kind, the kind that I had, is curable. Other curable cancers include colon, pancreatic, breast, lung and prostate. Of course, these cancers are only curable if an only they are caught early enough and haven't spread.

So when Chris Rock jokes that "...the same diseases been hanging out since I was a kid. What's the last shit a doctor cured? Polio?" He's sort of right.


I'm usually a guarded optimist. But there are remarkable medical breakthroughs happening today, but more centrally, within the study of cancers. Vice's HBO special "Killing Cancer," outlined some of these advancements. Like the work being done at the Mayo Clinic, where they're using a reengineered HIV virus to help fight blood cancers (with a 90% success rate among young patients receiving the treatment). Results like that makes everybody turn their head to hear more. The money is trickling down. It's reaching the researchers, clearly. But leukemia, a blood cancer, was first outlined by French surgeon Alfred-Armand-Louis-Marie Velpeau in 1827. It was fully apathologized in 1845 by German doctor Rudolf Virchow. It was categorized as a disease in 1900.

That was a long time ago.


But it's possible and quite probably more efficient to crowd-fund cures on our own, without the help of present-day "societies." 

Because we've done this before as a country. Sure, it was many, many years ago. Over seventy years ago, in fact. But it worked. It was called the March of Dimes. And it raised a lot of money; a ton of money, actually. 

But it helped -- a lot. Because one of the beneficiaries of a March of Dimes medical grant was Jonas Salk. Salk used his grant to transform his routine virus typing project to the creation of the polio vaccine (and gave it away for free).

So there is precedent for crowd-funding disease cures.

The American Cancer Society spends 33.9% of its budget on fundraising. It spends money to ask you for money. And only 60.6% of its expenses go toward programs and services, i.e., what you think the money is going to when you send them $10.

That's woefully inefficient.

The ACS of course has to have a CEO to run its billion-dollar business. It is a business, after all. And outgoing CEO John Seffrin made close to $1 million last year. 

Last I checked (didn't check), the Ice Bucket Challenge didn't have a high-priced CEO.


History has shown that over-aggressive, one-off campaigns, like the March of Dimes, like the Ice Bucket Challenge, can work, and in at least one instance, can help achieve cures. 

Which is why I propose we do an Ice Bucket Challenge every summer. Every summer it's a new disease. Cystic-Fibrosis. Alzheimer's. HIV. I don't really care what the disease is, so long as my YouTube history is full of :11 videos of people dumping water of their heads.