Making our disease human

The most effective marketing strategies make a human connection between the item and mainstream human beings. The carcinoid/NETs community has done a great job of putting a human face on the disease for other carcinoid/NETs patients and their caregivers–both professional and lay people.

We need to build awareness and knowledge from the grassroots level.

Each month, both the Caring for Carcinoid Foundation and the Carcinoid Cancer Foundation post a new human interest story about a patient or a caregiver on their sites.  They give that story a prominent position on their opening page. Walking with Jane posts the perspective of its caregiver founder as often as once a week. And there are numerous personal blogs that chronicle the day to-day-lives of both patients and caregivers.

The audience problem

The problem is the audience for all those pieces is people who are facing the disease in their personal lives and the doctors and researchers who work with them. Efforts to reach a more general audience with our story have largely failed. Periodically, a local newspaper does a story on a person within its readership area or a local television station does a piece. But there is rarely any truly successful follow-up, either locally or nationally.

The most effective marketing strategies make a human connection…

Even when we do get some kind of national moment, it does little besides create a momentary blip on the radar. Late last spring, one of my former students mentioned carcinoid/NETs on Wheel of Fortune. There was a brief uptick in views of this website as a result–and I suspect of others as well. But within two days everything had returned to the average range.

Diminishing returns

I’ve now done two appearances on Sirius XM Radio’s Doctor Radio with Jen Chan and Matt Kulke from the Dana-Farber Cancer Institute. The first appearance, again, resulted in an uptick in views for a couple of days. The second resulted in a smaller, but still noticeable uptick. Neither appearance seems to have led to a sustained increase in interest.

…within two days everything had returned to the average range.

And none of these three events resulted in an increase in charitable giving–at least not that I saw.

The national patient conference in Charlotte, NC garnered some local media coverage in the Charlotte area–but, again, that coverage never percolated up to the national level.

The missing human face on NET Cancer Day

We are early in the history of NET Cancer Awareness Day, both in the US and abroad. But with just 46 days to go before this year’s event, there are still no events opted on the event site–and no way to register an event on the site. Walking with Jane will do its annual Social Media-thon on that date, but no matter what I do, the site won’t let me register that event.

…that coverage never percolated up to the national level.

Massachusetts again this year will proclaim the entire month of November NET Cancer Awareness Month. Besides the Social Media-thon on November 10, I have several ideas I am working on for the month–but I’ve been a little busy with the Jimmy Fund Walk the last several weeks and know I am behind on getting those things put in place.

Facing facts

And that’s part of our problem–we have too few people working on too many projects. If we are going to raise this cancer to national attention we are going to need an awful lot of help. That means developing a long-term plan that will enable us to build the infrastructure–or find another way.

We are early in the history of NET Cancer Awareness Day…

In reality, we need to do both of those things. Last year, we tried to turn Facebook zebra with our NET Cancer Day ribbons. We need to do that again this year. But we need to do more than that.

How a human face reaches the media

When you read your newspaper in the morning or watch the news at night, it looks as though all the work for those stories was done that day–or shortly before. And for the straight news stories–things like fires and city council meetings–that’s true. But many of the stories you see have been in the planning stages for weeks. If we want stories for and about NET Cancer Day, we need to start working to get them now.

…we need to do more than that.

I’d like us to get local newspapers, television and radio stations, and other forms of media to do local carcinoid/NETs stories on November 10–or on other days in the month of November. That means we have to get local patients and caregivers to start working now to get their stories told. That means we need to start writing to local news directors and assignment editors over the next couple of weeks. And if those suggestions originate with local people, those news organizations are more likely to listen.

What a human can do–now

So if you are a patient or a caregiver–and are willing to tell your story to your local community–we need you to step up and put your face on this cancer for your local community in as public a way as you can stand.

…we need to start working to get them now.

If we are going to put a human face on this disease–and do so quickly–we can’t do this from a national level. We need to build awareness and knowledge from the grassroots level. That means we cannot stand around waiting for a miracle to happen or for someone to notice us. It means we have to take responsibility for making it happen.

In my next piece on this subject, I’ll try to outline how individuals can get the media attention we need.

(Editor’s Note: This is the third of 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, I’ll discuss how to put together a grassroots public relations campaign for the November 10 NET Cancer Awareness Day.)

(Editor’s Note: This is the second of 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, I’ll discuss the importance of individual patient stories.)

Image and substance

“Image is everything,” Andre Agassi used to say in an ad for the Canon Rebel camera when he was a well-known tennis player. The phrase used to make Jane and I cringe every time we saw it. And we saw it a lot. Jane loved tennis the way many people love football–and every tennis match we watched played that ad over and over again.

We need an image that will get the larger public to take us seriously.

For us, as teachers, substance always outweighed image. We didn’t care how people looked or dressed or what car they drove. We were concerned with the quality of the person’s mind and ideas, not the image they wanted to present to the world.

Image matters

In marketing, ideas and substance do matter. You can only sell a bad product so long before people catch on and leave. But no matter how good or important your product is, if you don’t project the right image–an image that grabs the public’s imagination and takes them where you want them to go–you won’t have much success either early or late.

For us, as teachers, substance always outweighed image.

For a retailer, that means you go out of business–or at least see your sales slump considerably. In the case of an illness like carcinoid/NETs, it means you don’t have much success in attracting donations. Without donations, basic research doesn’t happen. Without basic research, new treatments don’t get discovered. Without new treatments, people continue to die.

Powerful images

The creation of a strong and positive image–from a marketing standpoint–begins with the visual image associated with the product or service. The Jimmy Fund logo depicts a small boy in a baseball uniform in the act of batting. It calls up the vibrancy of youth, reminds the viewer of the organization’s long history with the Boston Red Sox, and underlines the tragedy of pediatric cancer. The figure is active and determined. While it draws on caricature, there is nothing humorous in its portrayal.

Without donations, basic research doesn’t happen.

The St. Jude Children’s Research Hospital is radically different, but creates a powerful initial image as well. It is dominated by the silhouette of a small girl praying. It reminds us that its founder was fulfilling a promise made to St. Jude for an answered prayer. It underlines for the viewer that these children–often hopeless cases when the hospital was founded–had–and too often still have– little beyond prayer to rely on without our help. It is a serious logo for a serious organization with a serious cause.

The problem with Netty

I like Netty, the zebra caricature that festoons many carcinoid/NETs sites. She’s cute and playful and reminds us of the excuse doctors always have at the ready for failing to find our disease–or anything else rarer than the most frequent cause of the symptoms. But Netty is exactly the wrong logo for an organization trying to raise public awareness of our disease. It lacks seriousness or determination. It turns the disease into a joke–and it is anything but a laughing matter.

The figure is active and determined.

We have enough trouble with people saying to patients, “But you don’t look sick.” Netty exacerbates the problem. She is an inside joke that the outside world doesn’t get the irony of. That cute little zebra is kicking people to death. We  get that. We understand that. But Netty undermines the message we need to be sending to the general public: This is a serious disease with serious consequences.

A sunny image

Caring for Carcinoid has its beautiful sunflower logo. From a graphic design perspective, I can’t find fault with it. And I understand it was a favorite flower of one of the founders. But it doesn’t tell a story to the general public the way the Jimmy Fund and St. Jude logos do. It lacks, at least for me, visual power as well.

That cute little zebra is kicking people to death.

Unlike the zebra, a sunflower is a relatively passive thing. It grows, it flowers, it waits for the bees to come pollinate it. And maybe that’s the point. It is an idea waiting to be born but needs outside actors to bring about that birth. There is at least one very successful organization that uses flowers very successfully: cystic fibrosis–which connects the disease to a small child’s miss-pronunciation of the disease’s name–sixty-five roses. But even they have to tell the story in every mailing they do.

Every image tells a story

The most successful logos tell their story without words–the way a successful photograph does. That’s what I set out to do when I sat down with two graphic artists to design the Walking with Jane logo. We went through dozens of photographs until we found one that was both the essence of who Jane was and what Walking with Jane was designed to do–aggressively go after a solution to carcinoid/NETs.

…it doesn’t tell a story to the general public…

Jane was an active human being. She was also a person of vision and a person who was not uncomfortable pointing out things that others did not see. She was a serious person in pursuit of serious things. I wanted to put a human face on the disease we were going after–but I wanted it to be a serious face–a vital face. I wanted an adult version of what the Jimmy Fund logo did–talk to people on multiple levels at once.

Letting people see themselves

But the logo had to be more than a photograph of Jane. It had to be capable of representing all of those battling the disease–and all those who died of the disease. That meant working to turn the photograph into something at once more abstract and more personal. The image shows, I think, all that we lost as a result of her death–and all that we can gain as a result of the way she lived her life. It is the story of every carcinoid/NETs patient writ large on a mountaintop.

The most successful logos tell their story without words…

People in marketing have told me it is among the strongest images they have seen associated with anything–that it really does tell the story we need it to tell–and tells it eloquently.

The image we need

We need such a logo as the visual identity of the disease we are trying to get people to pay attention to. It needs to portray the seriousness of the disease; it needs to portray the lives it destroys; it needs to portray hope; and it needs to portray leadership. The Walking with Jane logo does all those things–and I am willing to hand it to whatever carcinoid/NETs organizations want to use it. Free.

It is the story of every carcinoid/NETs patient…

But if people don’t want to use it–it is, after all, strongly associated with Walking with Jane–then we need to come up with another logo that does the same job at least as effectively. We need an image that will get the larger public to take us seriously.

General idea of marketing

I’ve spent three days largely confined to my car as I delivered this year’s Boston Marathon Jimmy Fund Walk t-shirts for our team. I do a lot of thinking and planning under those circumstances and spent some of those hours refining my thoughts about how to make carcinoid/NETs better recognized by the general population. As I said in my last post, I’m not very good at marketing–but I do understand the fundamentals of the business.

…we need to simplify our terminology.

Marketing, in part, is about creating a brand identity that people will relate to and want to be involved with. It is about creating a powerful series of images and experiences that will affect people’s emotions as much–or more–as their minds. The carcinoid/NETs community has not done a particularly good job at this. We need to think about how to get better at it. And there is no harm in looking at what others have done that has caused them to succeed.

Marketing success stories

Both the Jimmy Fund and St. Jude’s Children’s Research Hospital have done a good job of marketing themselves to the public. Show someone either of their logos and people immediately recognize the organization they represent. Both make use of compelling narratives that put a human face–or faces–on cancer. Neither is afraid to take risks in the pursuit of building both funding and their image. Both organizations are constantly trying to stretch beyond what they think they can do.

…creating a brand identity that people will relate to…

We need to think in similar terms. Crass as this may sound, we have to think about how best to sell our disease–how best to promote its existence to a higher level of societal awareness. We need to not only seize every opportunity to tell our stories, we need to cultivate a serious image of our disease.

The branding power of names

It seems to me there are three things we need to work on in the short-term. The first–and most fundamental–is to create a single name for this disease in the public consciousness. I was at a fundraising event this weekend for our Relay for Life team. I was asked at least 100 times (and I am not exaggerating) what the name of the disease was. The lack of a single answer to that question was a problem. When I said carcinoid, people thought I  was talking about carcinoma. When I said NET cancer, some asked where the NET was–while others wanted to know what NET stood for. The moment I said I said neuroendocrine, they assumed I was talking about brain cancer. When I used all the names, they looked confused.

…we have to think about how best to sell our disease…

It’s hard to sell something when it can be easily confused with something else. It is even harder to sell something when it has as many different names as carcinoid/NETs does. ALS is short for a real mouthful of syllables, but say Lou Gehrig’s Disease and people immediately know what you are talking about. Absent a famous name to attach to the disease, a common name that puts a human face on the disease–like the Jimmy Fund did with pediatric cancer–is another way to go.

Confusion results in failure

When I started Walking with Jane, the first thing I wanted to do was put a human face on the disease. I could have gone with something involving carcinoid or NET cancer, but neither term seemed very user-friendly. The terms had no poetry to them–and neither was very human.  Carcinoid is not exactly a word the rolls off the tongue–and NET cancer is not very descriptive in the way that breast cancer or lung cancer is.

It’s hard to sell something when it can be easily confused with something else.

It doesn’t help that we’ve gone through four different names in the last four years: carcinoid, NET cancer, carcinoid/NETs, and now carciNETs. We need to find a name that works. It needs to be simple–and we all have to agree that it is the word we will use with the general public. We may know there are multiple types–and physicians may have different words to distinguish these types–but we need to realize that every time we use multiple words for what is–in the mind of the public–a single disease–we confuse our audience–and confusion is the enemy when it comes to marketing and raising awareness.

Keep it simple

There are multiple forms of lung cancer, multiple forms of breast cancer. But when people think about those diseases they see a monolith, not the variations. Each form of lung and breast cancer has a different medical name, but with the exception of mesothelioma, lay people don’t use those terms nor really distinguish among them.

The terms had no poetry to them...

If we are going to reach the general public, we need to simplify our terminology. How we speak of this cancer among ourselves is one thing. How we speak of it to the general public is something else. We need to understand the complexities because we either have the disease or are caring for someone who does. But the average person does not need that level of knowledge–and will be turned off by it if we make the disease feel too complicated.

(Editor’s Note: This is the first of 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, I’ll discuss the power of visual imagery and logos.)