The Ice Bucket Boost

ALS got a huge boost from this summer’s “Ice Bucket Challenge.” The event went viral in ways no one anticipated and raised a boatload of money with minimal effort from ALS organizers. For a few weeks, ALS was on everyone’s lips–or so it seemed. As publicity stunts go, it was a huge success–at least for the summer.

…I am leery of publicity stunts in general…

As a young man, I experienced the pet rock craze. Retailers I knew could not keep them on the shelves. I remember a game called Simon. It, too, flew out the door faster than we could restock them. And there was Trivial Pursuit–bigger and with greater longevity than either the Pet Rock or Simon.

The lessons of history

All three, for a short time, made their manufacturers a significant amount of money. Ask the average 20 year-old about any of them and you will be met with a blank stare. Describe the Pet Rock to them–it was a generic rock in a small box with a set of care instructions–and you will be met with a priceless look of incredulity and some variation on the phrase, “People paid money for this?”

Retailers I knew could not keep them on the shelves.

Ask average participants in this year’s “Ice Bucket Challenge” what they know about ALS and about all they will be able to tell you is that they did the “Challenge” to raise awareness about the disease. They won’t know the symptoms or how it affects the daily lives of those it afflicts or even how many Americans have it. Five years from now, most will remember having poured the ice-laced water over their heads but not even the initials of the disease they did it for.

What people remember

The problem with publicity stunts is that in the long-term people remember the stunt but not what it was designed to draw attention to. That’s fine when you are marketing a product with a short shelf-life. But it’s not so good if you are trying to market awareness of a disease.

They won’t know the symptoms…

For carcinoid/NETs or ALS, a publicity stunt is only good to the extent it produces a longterm change in the prospects for a cure. If a significant percentage of those who iced themselves this summer become regular donors to ALS support and research, then this summer’s exercise will prove good for those who suffer from the disease. But if a significant number come to view the disease as the punchline to a joke or, worse, forget about the disease entirely when the next fad goes viral, then this summer’s activities may do more harm than good.

The value of publicity stunts

Of course any group of patients of one of the ignored diseases would be thrilled by that fleeting moment of public awareness. We all are convinced that viral moment will do for us what it has rarely done for anyone else. We would manage the moment better–our disease is more worthy, affects more people, is more hideous.

…people remember the stunt…

I’m not saying publicity stunts have no place in a marketing effort. But they can only be one element in a sustainable plan. The effort involved in them has to be minimal on the part of organizers–and there has to be a plan in place to take advantage of the attention they can bring if they break out in a large way.

Harder than it  looks

If we want to successfully market awareness and constructive concern about carcinoid/NETs in a sustainable way, we can’t rely on the accident of a passing fad–no matter how good it may make us feel in the moments it is happening. Nor can we afford to think that we are one good publicity stunt away from having the awareness of the disease we all crave.

…they can only be one element in a sustainable plan.

But getting that attention is far more difficult than it looks. Crafting something that will reliably go viral is not easy. Last year, for example, a group of us tried to get everyone on Facebook to change their profile picture to a zebra ribbon for NET Cancer Day. Less than ten percent of those who Like the Walking with Jane Facebook page actually did as we asked. Others had similar experiences.

Hard to maintain

And even major cancers have difficulty maintaining the momentum  a successful publicity stunt can provide. Breast Cancer Awareness Month, despite the support of the NFL and hundreds of companies, large and small, is seeing some fade from where the event was 2-3 years ago when my local newspaper was running pink front pages every day for a month and one could not walk through a grocery store without engaging with pink items in every aisle.

Crafting something that will reliably go viral is not easy.

Social media, however, tempts us to think and act otherwise. It provides us with a huge audience that is seemingly a single post away from becoming active on our behalf. The question is, what kind of attention do we want and how do we go about getting it?

Relay as publicity stunt

Probably they single most successful publicity stunt–it is the biggest single cancer fundraiser in the world–is the American Cancer Society’s Relay for Life. For more than a quarter of a century it has raised awareness and funds for ACS programs in research and patient support. It is a brilliantly conceived event that shows what the real potential of such efforts can be with careful planning and support.

…engaging with pink items in every aisle.

Dr. Gordy Klatt‘s initial plan was simply to run–by himself–around a track for 24 hours. The next year, he offered to let people run with him for a specific pledge amount. The event evolved from there and continues to do so today and–while it faces some problems–it is a model for publicity efforts that do more good than harm.

Grassroots connections

One of the keys to its success is a dedication to grassroots efforts. Every event has a core of local volunteers that has a unique understanding of its local audience and what it will support. The problems it faces are largely brought about by the efforts of the national organization to take greater control over what is going on at the local level.

It is a brilliantly conceived event…

Given the history of ACS in the 1950s, when it was, in many ways, a classic grassroots organization, that move is well-coated in irony. But there has always been a creative tension between the national office and the local groups it relies on. In some senses, every Relay is a separate organization that is allied to the national goal of eradicating cancer. The regional and national headquarters–at their best–try to co-ordinate and support those efforts with expertise and materials.

Building a sustainable future

My point is, though, that ACS and Relay can serve as a model–albeit an imperfect one–for building a sustainable effort against any disease. They make good use of the publicity stunts they use within the larger context of raising money for and awareness about cancer generally.

Every event has a core of local volunteers…

I am not suggesting, however, that carcinoid/NETs needs to launch a collection of new Relays. Frankly, the walk and run markets are pretty well saturated. Every weekend has five or 10K walks or runs for a wide range of causes. Breast Cancer and MS even have multiple day events in effort to distinguish themselves from shorter distances.

The role of publicity stunts

But while I am leery of publicity stunts in general–I am convinced that the right kind of event with the right kind sustainable efforts in place behind it can be a useful part of the marketing puzzle. But it is only part of the plan–and not necessarily a very big part.

(Editor’s Note: This is the eighth in a series of pieces that will approach the problem of carcinoid/NETs not as a medical problem but as a marketing problem. If we are going to increase funding for the disease, we have to think of it as something other than a medical issue. We need to make it a human issue for the general public. In my next post in the series, we’ll look at the use of social media in a marketing campaign.)