Lessons of the past

Lou Gehrig, the legendary iron-man of baseball, put ALS on the map in 1939. Before that, it was a mystery disease no one knew existed. His celebrity status elevated an illness diagnosed less often than carcinoid to public consciousness in a single afternoon.

We want a cure.

Unfortunately, that awareness of the disease did not result in a sustained increase in research money. I have a former student who deals with that disease every day because, 75 years later, we still have no cure for it. This year’s ice-bucket challenge may change that–but Gehrig’s announcement did not.

Lessons of the present

Michael J. Fox’s announcement several years ago that he has Parkinson’s Disease has generated both greater awareness of the disease and an increase in funding for research. But it was a disease that already had more than a million people living with the disease–and another 50,000 a year being diagnosed. Fox put an immediately recognizable face on the disease–one with easy access to the talk show circuit. But how much of a game-changer his announcement will prove in the long-term is harder to gauge.

His celebrity status elevated an illness…

No one, however, can argue against the impact of Betty Ford’s announcement in 1974 she had breast cancer. It really did change the complexion of the fight against breast cancer because it made it OK to talk about it in public. Part of the reason this month’s Breast Cancer Awareness Campaign is as big as it is traces back to Betty Ford’s courageous admission that she had the disease. It was a game-changer whose size is hard to explain to people who were not alive at the time.

Missed celebrity moments

An announcement from Apple CEO Steve Jobs that he was suffering from carcinoid/NETs or pNETs before his death might have had a similar impact. He had the celebrity that could have electrified the general public. Wendy’s founder Dave Thomas, who is also reported to have had this cancer, could also have had an impact. Neither made that choice–and part of me understands why.

Fox put an immediately recognizable face on the disease…

Think about the symptoms of carcinoid/NETs and pNETs: endless diarrhea, constant bloating and gas, and sudden episodes of flushing are not things people are comfortable talking about. Gastrointestinal distress is polite jargon for some of the most embarrassing physical problems we can conceive of. My wife was embarrassed when she passed wind while she was asleep if I were thoughtless enough to mention that it happened.

Embarrassment factors

We won’t discuss her extreme embarrassment when her diarrhea became uncontrollable in the last weeks of her life and what that did to her self-image. Put yourself in the position of a celebrity with a carefully crafted public image of self-control and it is easy to understand why none has emulated Gehrig, Fox, or Ford on carcinoid/NETs.

Think about the symptoms of carcinoid/NETs and pNETs…

And would such a celebrity “endorsement” have a sustainable and positive impact on either awareness or fundraising? That would, in part, depend on the celebrity and his or her sustained support of the disease. Part of the problem for ALS was that Gehrig simply was in no position to lead that charge for very long–and he didn’t look sick when he left the public eye.

Celebrity vs. prevalence

Fox and Ford made sustained efforts to keep both themselves and their disease in the public consciousness for a sustained period. But the prevalence of both their diseases helped maintain public attention as well. The breast cancer community built on Ford’s announcement and presence. They created an infrastructure on that foundation that could be maintained and expanded–and has worked for nearly 40 years since to do so.

…he didn’t look sick when he left the public eye…

Breast Cancer Awareness Month did not just happen. It is the result of four decades worth of effort at the grassroots level to capitalize not only on Ford’s announcement, but also on the number of people and their families facing the disease. The combination has created enormous leverage–but it did not happen overnight.

Dangers of celebrity

Whether Fox will ultimately do the same for Parkinson’s remains to be seen. The Parkinson’s community is far smaller than the breast cancer community. Further, will the Parkinson’s community mount the same kind of grassroots effort to build on the foundation Fox’s personal effort has created? Or will it, now that it has its celebrity spokesperson, sit back and watch?

Breast Cancer Awareness Month did not just happen.

That is one of the dangers of the prominent celebrity spokesperson where any group is concerned. There are, of course, others, depending on the ego of the celebrity involved. A celebrity may decide to form his or her own foundation that will have far greater visibility, certainly, than a foundation without that star-power. But pre-existing foundations may find themselves on the outside looking in after years of nurturing donors and researchers.

A double-edged sword

Celebrities can also become paternal or maternal about pre-existing foundations they choose to associate themselves with. This can be a good thing, perhaps, but it can also be a bad thing if they decide they should be in control of the day-to-day decision-making or want to take a hand in deciding where the research dollars go.

Whether Fox will ultimately do the same for Parkinson’s remains to be seen.

I’m not sure where I am on putting a celebrity face on this disease–or whose face that should be. But regardless, we all need to remain acutely aware that a celebrity face will not automatically bring us a sustainable increase in either awareness or research funding. Seventy-five years from now we don’t want to be in the position ALS finds itself a similar amount of time after Lou Gehrig became its face.

We want earlier and more accurate diagnoses. We want new and better treatments. We want a cure. None of those things will happen without an ongoing commitment from each of us to bring that about–whether we find a celebrity spokesperson or not.

(Editor’s Note: This is the seventh 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 publicity stunts like the ALS ice bucket challenge.)

Cancer awareness envy

I have to  admit to a degree of envy as a carcinoid/NETs advocate at this time of year. Breast Cancer Awareness Month begins tomorrow. For the next month, the United States will turn pink–right down to the laces on a football players shoes. There are special cans of soup, special kitchen appliances–special everything.

…we need to have an intelligent discussion…

There is no type of cancer that has been better marketed than breast cancer. Never mind the charges of companies pink washing their image and only turning over the smallest possible percentage of the income earned to breast cancer research. Those of us trying to raise awareness and funds for carcinoid/NETs would take those problems in an instant if we could have that kind of stage for even one day–let alone an entire month.

Breast cancer deserves its time

Don’t misunderstand me: breast cancer and breast cancer research very much matter to me. My younger sister is a long-term breast cancer survivor, I lost one of my best friends to it this winter, and I have many other friends and acquaintances who have been touched by it–including my sister-in-law, who is a five-year survivor. It is the third most common cancer in the US. It deserves a substantial budget and substantial attention.

I have to  admit to a degree of envy…

But for the next month, it will drown out every other cancer in the public consciousness. And for a month after that, the general public will remain burned out on cancer.

Caught in the backwash

There could be a worse time than November to schedule NET Cancer Awareness Day. There could be a worse month for Massachusetts to proclaim as NET Cancer Awareness Month. We could have picked a day in October–or tried to use the entire month. Even without Breast Cancer Awareness Month in October, however, November is not an ideal time of year to schedule an awareness day for any disease–let alone one as historically challenged as carcinoid/NETs.

…the general public will remain burned out on cancer.

Even in early November, the weather has already begun to become dicey for outdoor activities in much of the country. People are thinking about Thanksgiving and Christmas. And the major charities have shifted their mail campaigns into high gear for end-of-year giving. And let’s not mention that November 10 is the day before Veterans’ Day–Armistice Day in the rest of the Western world–and that the focus in that timeframe is on the military and the end of World War I.

Wrong time of year

We are essentially shouting our message at people who have had an entire month of cancer stories thrown at them by the media–a media that, by the end of October, is ready to be done with cancer stories for a while because Thanksgiving is coming and Christmas is coming and we need uplifting stories about cures if we are going to do cancer at that time of year. And carcinoid/NETs doesn’t have those kinds of stories to tell.

People are thinking about Thanksgiving and Christmas.

In marketing, timing matters. November is the worst time in the year to be selling anything other than toys, turkeys, and honoring veterans.

Finding the right time

In the short-term, we have to live with November 10 as NET Cancer Awareness Day. But in the longer term, we need to have discussions about a better–more marketable–time to do this. We need a time when the weather is warmer and when there are fewer distractions. And when we won’t be dealing with the Breast Cancer Awareness Month hangover.

In marketing, timing matters.

May, June, and September strike me as ideal months. The weather is relatively pleasant and there are no major holidays in them with the kind of punch Thanksgiving and Christmas deliver. Of course, other cancers may already have a claim on those months. Certainly, May and June would put us in competition with many local Relays for Life. But even that would be better than dealing with the triple behemoths we face in November.

Please respond

As is the case with much of what I’ve written on the marketing issue in recent weeks, we need to have an intelligent discussion about this topic that goes beyond what I have written to this point. Once I’ve finished looking at the problems we face in marketing carcinoid/NETs to the broader public, I will make a number of concrete proposals about what I think we should do.

May, June, and September strike me as ideal months.

But between now and then, we need everyone who is dealing with this disease to take some time to think about these things and join the conversation about what we need to do–and how we can best accomplish what we all agree needs to be done.

(Editor’s Note: This is the sixth 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 the next part of this series, we’ll discuss the potential of a celebrity spokesperson.) 

Learning from a failed effort

All news, like all politics, is local. I forgot that in the early months of Walking with Jane’s effort against carcinoid/NETs. Despite years of work in journalism, I thought if we could put together a single, compelling package of stories from a central source that newspapers across the country would snap those stories up and use them.

That effort begins with each of us.

Those stories are still in our press kit. They have found their way into maybe three regional publications and inspired one or two other newspapers to do a bit more with carcinoid/NETs than they might otherwise have done. But for the most part the hundreds of hours of effort fell on deaf ears.

Local effort will always bear more fruit

I should have known better. As a high school journalism adviser, I constantly reminded my students that people wanted to know about the people in our school community–that barring we landed an interview with the president of the United States, our readers would not be likely to read something about someone whose life held little meaning for them and who did not have local roots.

All news, like all politics, is local.

Go through your local newspaper and you will realize they largely subscribe to the same idea. The headlines on page one of my local paper start with a campaign to recall our mayor, a story on the improvement in city schools, and a meeting between our House rep. and local business owners. The only non-local story on that page is the US attorney general’s resignation, which got a headline and 60 words.

National awareness builds from local awareness

If we are going to reach a national audience, the effort has to begin with local stories–lots of them–bubbling up from the local level. I can interview a Fall River patient about their experience with carcinoid or NET cancer, but there is no audience for that story in North Texas or St. Paul or Spokane beyond others who are fighting the same disease. Any effort I make to get that published outside my immediate area is going to be a waste of both time and effort.

I should have known better.

And my pitching your story from here is likely to meet the same fate. If we want local news organizations to pay attention, requests or suggestions for stories need to be made at the local level. Modern media organizations exist to make money–not to distribute news and information. Unless something can be shown to have profit potential in the local market, it just is not going to fly.

What you know–and need to know

And that’s where patients and caregivers come in. You know your local media better than anyone else does. You know your disease better than anyone in your local area–or know who the local media can talk with who has the expertise you lack about the disease and how it works. You can also get that information by looking at the Carcinoid Cancer Foundation’s list of doctors with expertise in carcinoid/NETs.

…the effort has to begin with local stories…

Media outlets are beginning to plan late October and early November feature story and package ideas as we speak. Reporters are working on their  breast cancer awareness stories for October right now. If we want stories on carcinoid/NETs, we need to be pitching them to assignment editors and news directors in the next few weeks. If we wait until November to ask for stories about NET Cancer Awareness Day, it will be too late.

Beginning the effort

The effort to get our stories onto the news agenda begins with contacting the editor of the local newspaper and/or the news directors of all the local television and radio stations. We can also reach out to the program directors of local radio stations that do not have a strong news presence. There are two ways to do this–and either will work well.

You know your local media better than anyone else does.

The first is simply to call the person on the phone. If you know a particular reporter, calling them is the easiest way to go. You already have a relationship with them–even if it is a different context. And if they are not the right person to do the story–they are a sports reporter, say–they can direct you to who is. But before you get on the phone with anyone, know what it is you want to say. You want to underline that this is not your normal cancer, what kinds of symptoms you have, and how those symptoms restrict the way you live your life. You may also want to mention how difficult it is to find a local doctor with knowledge of NETs–or how far you have to travel to get treatment.

The basic press release

The second approach is to either mail or email the person a press release or letter. Again, describe the disease and what it is like to deal with it in your context. Include all the same things I’ve talked about for the phone call, as well as a phone number the person can contact you at. Also, make sure you include the NET Cancer Day hook. News people love to be able to hook a local story to a national or international event.

…know what it is you want to say.

Regardless of the method you choose, contact as many different local media outlets as you can, including your local cable outreach folks. They won’t all jump on the story. If you can get one local newspaper, radio station and television station to do a story, you’ll have accomplished a lot. And don’t be disappointed if you only get one outlet total to bite.

Making the effort pay off

Next, prepare yourself for the interview. For the most part, you are just going to tell your story. But if you can help the reporter out with connections to your primary care doctor, oncologist, or someone in the region with expertise, they will see that as a plus.

…contact as many different local media outlets as you can…

After the interview, make sure you send thank you notes to everyone involved. Then make follow-up calls when something newsworthy arises–a new treatment, for example, or a trial of a new therapy that is starting up in your area or that you will be involved in. If you take good care of your local media folks, they will take good care of you down the line. Remember that every article or story we manage to get in front of people’s eyes builds awareness of the disease–and will increase the likelihood of donations.

We need to change the numbers where our disease is concerned. That effort begins with each of us.

(Editor’s Note: This is the fourth 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 provide a model press release for the kind of NET Cancer Day-based interview I’ve suggested above.) 

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.)