Have you noticed?

We diagnose roughly four times as many cases of NET cancer as we do cystic fibrosis in the US each year. But cystic fibrosis gets noticed. We diagnose roughly four times as many cases of NET cancer as we do MS. But seemingly every county has an MS Walk. We diagnose roughly two-thirds as many cases of ALS as we do of NET cancer each year, but ALS inspired the ice bucket challenge.

…we haven’t had a breakout moment, yet.

All four of these diseases are considered rare, but ask the average person about them and chances are they’ll have heard of three of those diseases. The odd man out is NET cancer–even though it affects more people than any of the other three.

Getting noticed harder than it looks

I’m frustrated by that fact. I’ve written on NET cancer for five years. I’ve gotten reporters and patients and caregivers to write about it. I’ve made videos and PSAs and talked on the radio about it. And when someone is diagnosed with the disease, Walking with Jane is a place new patients often find themselves. But none of those efforts–here or elsewhere–has created more than a tiny ripple outside the NET cancer community.

The odd man out is NET cancer…

I can only imagine the frustration of the people at the NET Research Foundation, who’ve been at this for more than a decade. Nor can I even begin to imagine the frustration of the people at the Carcinoid Cancer Foundation who’ve worked for nearly 50 years to raise awareness of NET cancer.

Who gets noticed?

What does it take to get noticed? A child with a cute story helps–at least it did with cystic fibrosis. The kid heard the name of the disease and turned it into 65 roses. That’s probably not going to help us, sincere have very few patients diagnosed before their 20s.

A celebrity who publicly acknowledges having the disease also seems like a winning strategy. ALS had Lou Gehrig–though the Pride of the Yankees is long dead. Steve Jobs could have filled that role for NET cancer. It didn’t happen–and likely won’t.

Marketing who we are

But MS has gotten there with neither a celebrity nor a cute kid. They’ve built their identity one piece at a time. It would seem that’s what we will need to do.

Our 3-in-3 group gathered today for our monthly meeting. A volunteer with a background in marketing at a large firm joined us. We brought her up to speed on what we’ve done so far. She’s thinking about the marketing problem NET cancer presents.

Why we need to be noticed

We have made progress in recent years. We have online support groups no one imagined 10 years ago. We’ve gotten local TV, radio, and newspaper attention in a number of markets. Students hear about it frequently in med schools. We have several cancer centers with growing NET cancer programs.

But we haven’t had a breakout moment, yet. We need one. We need one so more doctors are aware of NET cancer and think to order the tests we have earlier in the process so we can catch the disease in an earlier, more treatable, phase. We need one that will create a sustained source of income for our researchers. But most of all, we need one for our patients so they can get the treatment and the therapies they need–and deserve.