Friday, December 12, 2008

For the record - neuroblastoma is not rare

Yesterday afternoon I had another opportunity to be on television to talk about neuroblastoma. Over the years I have done many of these interviews and I have kind of developed a picture in my mind of key points that need to get out. It is a simple plan really. I begin by talking about our personal story. It could be any one's story. The point is to make it real - to show that perfect, wonderful, normal kiddos get cancer - to show that it can effect anyone - to show the devastating effect it has on a family. Everyone that knows me knows that I could go on with this subject for hours but, the trick seems to be when you need to make this emotional appeal in a minute or less. With a little practice it is possible.

The next thing I like to talk about is prevalence of childhood cancer. This is my biggest frustration with just so much neuroblastoma messaging. For some reason everyone likes to talk about how "rare" neuroblastoma and pediatric cancer are. They want to focus on all types of numerical statistics that show the "rarity" of pediatric cancer. My point of view? Remove the word rare from the list of acceptible adjectives. This messaging drives me nuts. Childhood cancer is the number one disease killer of children in the US, incidence is growing every year, and neuroblastoma is the most common cancer in infancy. Period. It is this one sentence (or run on of 3) that makes the point that childhood cancer is a huge issue for Americans. It illustrates that the problem is much larger than my one sad story. It effects everyone with a child or a grandchild. Heck, it effects everyone with a functional heart.

With this I have now established an emotional appeal and shown that the problem is prevalent throughout the US.

The next thing I always focus on is the problem. The problem is funding - pure and simple. I don't get more complicated than that. It is not hard to find some compelling statistics. If you have read my diary or have seen me speak you are probably aware that I consistently use 2 approaches to get this point across. For me, they have all worked pretty well.
  1. In 2007 the NCI's Federal annual budget for cancer research is 4.8 billion. The NCI spent over $570 million on breast cancer, almost $300 million on prostate cancer and less than $172 million on all 12 major classes of childhood cancer. Yes, that is only $172 million that has to be shared among almost 90 different childhood cancers.
  2. Cancer is a more common killer of children than aids, cystic fibrosis, muscular dystrophy, and asthma - combined? This is in direct contrast to the fact that we spend almost $600,000.00 research dollars for each child affected with aids and less than $20,000 for each child affected with cancer.

I think these 2 points do an excellent job of showing the unfairness of the funding problem. It illustrates very clearly that childhood cancer is underfunded and needs support. Put all together I have found this methodology to be short, to the point, and tremendously effective. It creates an emotional personal appeal that demonstrates an injustice which effects a large population. All that is left is to give the viewers and listeners a call to action.

So ,why do I post this information this morning? Well, for two reasons. One, I am often asked by families and people that want to speak on behalf of children with cancer - "What do I say?" I continually see posts and receive emails asking for statistics and guidance. For that reason, I am not a media professional but this is what I have found that works for me. So, I thought I would put it out there. If anyone has anything that they think would work out better I would love to hear from them.

The second reason I am writing this is out of pure frustration. As I mentioned last night, I had a TV interview and the very first thing that the interviewer came out with was - "So, neuroblastoma is a rare cancer that only effects 650 children a year..." Unfortunately I did not get to address that particular question so, as you might expect, I left completely and utterly frustrated. It makes me wonder. If that is the message that gets out, do we do more damage than good?

I've got the purpose. I just have to convince everyone else to get it to.

1 comment:

Jess said...

Mark -
I work for a children's cancer advocacy group in DC(the Children's Cause for Cancer Advocacy - and I've been reading your blog for several months after stumbling upon it. I just wanted to say that - while I always appreciate reading about what you're up to in the advocacy community (and what your kids are up to in their latest trouble-making exploits!) - I really thought your comments about the messaging issues with childhood cancer were very insightful and well-written. I've passed this along to our staff, as it's especially timely for us since our winter print newsletter has a feature article on neuroblastoma and we're finishing it up right now - this blog post will hopefully help our staff focus some of our thoughts a bit as we edit that piece, to make sure we're hitting the right message. Thanks again for always sharing what you're up to and thinking about!
- Jess