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.)