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08.26.14

#icebucketchallenge: A Public Health Practitioner's Perspective

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I work in the field of public healO'Neill Iceth. If you are reading this post, you probably do too. And if you think like me, you see the ALS ice bucket challenge with a mixture of awe, bewilderment and general frustration that you didn’t think of it first.
The ice bucket challenge has proven to be a brilliant marketing tactic that happened accidentally. A series of cold water dumping events for various charities happening sporadically around the world quickly became focused on ALS. The roots of the challenge are debatable. Depending on who you ask, either a pro golfer challenged friends to raise money for ALS or a former Boston College baseball player, who was diagnosed with ALS in 2011, challenged friends and celebrities (including NFL quarterbacks Tom Brady and Matt Ryan) to take the ice bucket challenge to “strike out ALS.” The Internet disagrees about the challenge’s origin, but this Slate piece sums up the history well.
The idea of cultivating social pressure to raise money for a particular disease or charity is not new at all. How many times has a friend asked you to donate in support of a race she is running, cookies he is baking or mountains they are climbing for a particular cause? Social pressure to raise money works. As evidenced by the ice bucket challenge, social media can generate tremendous social pressure to raise funds and boost awareness.
At the O’Neill Institute, my work has largely focused on public-private partnerships and a little known, but increasingly growing area of research funding called venture philanthropy. In the rare disease space, venture philanthropy means a non-profit disease foundation or its affiliate raises capital in order to directly fund scientists and drug companies to do research on various stages of drug development from understanding the basic etiology of disease to actual drug discovery. Return on this investment typically funds more research.
The story of Kalydeco, a miracle treatment for a specific gene mutation that causes cystic fibrosis, represents the power of crowd sourced fundraising and boasts the kind of breakthrough the ALS society hopes to achieve from its new fortune. Spurred by the fundraising efforts of desperate parents, the Cystic Fibrosis Foundation (CFF) created the Cystic Fibrosis Foundation Therapeutics Inc. to finance the research that eventually lead to a drug. To be clear, much of the research that led to the discovery of Kalydeco was built on years of NIH-funded research about the basic biology of the disease. However, the money available was simply not enough to incentivize a pharmaceutical company to develop a new drug. Without the drive and financing from CFF, that research many never have turned into a fantastic therapy.
Movember is a great example of turning a fun stunt into a well-sustained, money- generating program. In 2003, while joking about the waning prominence of the mustache in a bar in Australia, two friends decided to encourage 30 others to grow mustaches and donate $10 to charity in the month of November. Since 2003, there have been 4,026,562 Mo Bros and Mo Sistas growing mustaches and raising money for men’s health issues. According to Dr. Jonathan Simons, CEO and President of the Prostate Cancer Foundation:

Movember has initiated a growing international dialog on prostate cancer and men’s health and is an invaluable partner in energizing the global research enterprise for prostate cancer. Here in the US, unrestricted funding from Movember is helping the Prostate Cancer Foundation accelerate the world’s most promising research, enabling game-changing projects from whole genome sequencing and the development of innovative therapies. These will help men with advanced prostate cancer live longer, more productive lives than ever before.

Venture philanthropy dollars are revolutionizing medical product research and development and, in some cases, providing an antidote to declining federal research dollars (for more, see FasterCures). In 2010, the budget of the National Institutes of Health (NIH) peaked at $31.2 billion, but has since fallen to $30.2 billion in 2014. This number is actually lower when accounting for medical inflation and the 2013 sequester’s automatic 5 percent cut to the NIH budget. Both CFF and Movember are supported by money raised through social fundraising, largely over the internet. Each of these campaigns has produced tangible results for patients and their families.
As Mary Wholley, CEO of Research!America explained, venture philanthropy dollars may not be enough to fund a cure, but privately raised money, like that from the ice bucket challenge also “makes it possible for some young scientist to get a start to try out their new hypothesis before they are ready to submit a proposal to NIH.” Woolley added, “[i]t may also bridge some dry spells they’re feeling right now because the NIH is really strapped.”
Like any social media campaign, the ice bucket challenge is not without its critics. In 2010, the economist Malcolm Gladwell proclaimed that “facebook activism succeeds not by motivating people to make a real sacrifice but by motivating them to do the things that people do when they are not motivated enough to make a real sacrifice.” In step with this line of thought, critics of the ice bucket challenge have questioned whether people even know they are supposed to donate money at all, whether motivation to participate is catalyzed by the cause or just the trend, or to show off a nice body in a wet t-shirt.
I would counter these critics by asking so what? In the context of medical research and scientific discovery, the most significant way the vast majority of the public can participate is with their wallets. Raising awareness encourages others to open their wallets as well. An individual’s motivation for giving is simply irrelevant.
Whoever was the actual first to direct the ice bucket challenge towards ALS research had one goal: to raise awareness and money for ALS. Mission accomplished on both fronts.
When it comes to medical research and new therapeutics, private financing is a significant vehicle to supplement public financing. Venture philanthropy allows motivated parents, caregivers, siblings and friends to catalyze their energy into medical research. As evidenced by the ice bucket challenge, strangers with no connection to a particular disease can be motivated to action as well. I am glad the public caught on to the ALS ice bucket challenge and hope it will succeed in advancing health outcomes for people living with ALS.
I look forward to the next challenge. Perhaps I will even come up with it on my own.
 
 

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