Gifted writer and cancer patient advocate, Greg Brozeit, kindly offered to share his unique perspective with us after learning I was going to be under the weather for a while. You may remember Greg’s work memorializing Mike Katz this spring:
Greg will be crafting a weekly column for us until I’m home and settled in. Now that the dust has settled, Greg chose to kick things off by revisiting the myeloma community’s reaction to Tom Brokaw’s diagnosis and book launch:
Celebrities and Silos
Tom Brokaw’s book and broadcast about his life after being diagnosed with myeloma created excitement in the patient community. It drew attention to myeloma. It fed a hope that it might even speed up progress toward cures.
Responses to Brokaw’s honesty about his personal journey are understandable. His story provides inspiration and empathy to many myeloma patients. The same could be said about countless memoirs, articles and films about a person, famous or otherwise, affected by any disease or disability.
But it also raises some uncomfortable questions. When celebrities are diagnosed with a disease, incongruous discussions take place among advocates. On the one hand, their personal experiences and consciences tell them this is tragic; they wouldn’t wish their disease on anyone.
On the other, a hope—sometimes silent, sometimes not—that a celebrity will attract and recruit more resources to fight the disease emerges. A headline on this blog even proclaimed, “Tom Brokaw’s misfortune might be our big break!”
This is reasonable given the relative rarity of myeloma. After all, almost every patient has a variation of “When the doctor told me I had myeloma, it was the first time I ever heard the word,” Tom Brokaw included.
Most myeloma patients know the relevant statistics: 6 per 100,000 population incidence in the general population; 1% of cancer incidence; an estimated 26,850 new cases diagnosed in 2015; five-year survival rates are between 46.6% and 79.8% depending on what aggregate or institutional data one chooses to cite. Additional numbers could fill a volume.
But do these numbers really mean anything to the average person? Consider one more statistic. According to information cited in a Myeloma UK video, “only” 3% of the people they asked had heard of myeloma. Assuming this is a representative sample, is that really bad? I don’t think so.
Let’s extrapolate: 3% means 3,000 per 100,000. Compare that to an incidence rate of 6 per 100,000. This infers that a whole lot of people who are not myeloma patients, caregivers, family members, or friends have heard the word. “Only” doesn’t sound so bad now.
Think of it another way. What does the average person “know” about a solid tumor malignancy—breast, prostate, lung, colon, pancreas, etc.—really know about it other than where (sort of) it is? And what does it matter if it did? What about other rare diseases?
Is it realistic for everyone to be literate about every type of disease? What did the average myeloma patient care about knowing about the disease the minute before they were diagnosed?
There is a danger, once diagnosed with a rare disease like myeloma, that patients will falsely believe that they are somehow unique, or at least members of a small group that few outside of it can understand. They become frustrated that more progress hasn’t been achieved to treat and cure their disease.
Consequently, as members of a disease community, it becomes easy to accept the fallacy that “our” disease is somehow unique or more important than others. They do so even when they don’t understand much about other diseases—or how much their experiences have in common.
But mostly, I believe, it can be ascribed to innocent, albeit well intentioned, ignorance—people who are motivated to become vocal because of a personal experience they feel few understand.
They won’t say it as bluntly as that, though. And they’ll find safety in numbers with like-minded patients and advocates. In my opinion, a relationship exists between this view and the hope that celebrities’ stories will bring hope to a particular disease community. It can be summed up in one word: silos.
The idea behind silos can be condensed into, “All diseases are bad, but mine is worse and that’s why you need to pay attention to me.” It leads to the creation and defense of personal, organizational and political turf that weakens the ability to form broad-based coalitions.
Silos are largely built on misplaced and fragile foundations. And when patient advocacy is built on these underpinnings, silos become hardened and their actions are ultimately counterproductive.
So, knowing about silos, is it important for the general public to know what myeloma is? Does a disease become more relevant because it is associated with celebrity? More to the point, do we, as citizens, really want attention to common interests, needs and causes to be dependent on celebrities?
I would argue that it should not. Too much of our public discourse is skewed by celebrity-driven stories. And is this really the best, most productive or fair way to raise awareness or prioritize decision making? If not, how can we tap into the reality that celebrities will raise awareness and use it to break down silos and achieve broad public interest in common goals?
Processes should be in place to support every American in any disease they may have to confront. And it is more important that public opinion and resources are directed to assist and give them hope, through research and medical care, regardless of disease or disability.
The challenge ahead will be to turn the short-term optimism created by Tom Brokaw’s story into a better, wider world of hope that includes the myeloma community, not just focusing on it.
Greg, I think most in the cancer community are working from the successful breast cancer awareness and research model. It does create an “us against them” mentality. Pink ribbons suck up most of the oxygen–and a lot of the money–in the room.
I appreciate your global perspectiveWelcome aboard!
Feel good and keep smiling! Pat