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.)
