In my book, Identity Crisis: Healthcare Branding’s Hidden Problems and Proven Strategies to Solve Them, I have a chapter that outlines the discipline of creating brand identities for diseases. The benefits are many: greater public awareness, greater community support, the potential for enlightening dialogue, enhanced funding for research and insurance reimbursement, and most importantly, the ability to reduce the power such nameless, faceless entities have over our lives. Giving a disease a brand name is an act of defiance, a willfulness that broadcasts we are not going to take this lying down, alone and in silence.
John McCain’s brain cancer can teach us about glioblastoma survival
Amyotrophic lateral sclerosis, or ALS became one of the first “celebrity-branded” diseases when it became known as Lou Gehrig’s disease
This past week, the news media reported that Senator John McCain was diagnosed with “a form of brain cancer”—a genericized description that thwarts dialogue and prohibits a clear pathway for optimal relief. However, this kind of brain cancer has a name—glioblastoma—but a name that reveals nothing about it. Glioblastoma winds itself like ivy in the brain, furrowing into the crevices so insidiously that resection by surgery is difficult if not impossible, and radiation cannot effectively hit its bulls-eye target. That’s a distillation of a much more scientific description, and one that makes the concept a little clearer, but not one that conjures up a bumper-sticker name we can all pronounce, like a password, signifying the problem and potential solutions. Overactive Bladder replaced incontinence as a branded disease identity. Carpal Tunnel Syndrome gave shape to “that painful feeling one get’s in one’s hand because of too much keyboard activity.” But these were conditions from which many suffered, speeding the need to give such public menaces names. Glioblastoma—like Amyotrophic Lateral Sclerosis (ALS)—is relatively rare, and obtusely named. Could it benefit by donning a celebrity identity the way that ALS is commonly called Lou Gehrig’s disease?
If you are like me, you cannot help but respect the commendable public service record of Senator McCain, regardless of political affiliation. War hero, Congressman, Senator, “maverick” supporter of bold legislation. And he now adds “glioblastoma victim” to his personal brand identity. I know this may sound harsh. However, the reality about illnesses, especially chronic and/or lethal conditions, is that they change who you are—your personal identity. It perpetrates an Identity Crisis where you seek out healthcare brands that help restore to you what illness has robbed. Unfortunately for Senator McCain, glioblastoma has a dark prognosis—a 20% chance at best for remaining alive at year three with the current standard of care: surgery, chemotherapy and radiation. Perhaps Senator McCain can be called on one last time to serve the public by becoming the famous name behind such an unknown and devastating disease. John McCain’s Disease. People would flock to Google to learn more about it. Patient and professional advocacy groups could rally around Senator McCain’s cause and shine a light into the darkness to illuminate earlier diagnosis and the potential for greater survival rates and better cures. His story can become the iconic narrative for the approximately three in 100,000 people in North America and Europe who suffer from the disease each year.
I watched prominent network nightly news show (CBS) the day John McCain’s illness became public knowledge. The network’s chief medical correspondent, Jon LaPook, MD, is a graduate of Yale and an NYU School of Medicine Professor. He’s won two Emmy’s for his reporting. Granted, Dr. LaPook is not an oncologist, brain surgeon or radiologist (he’s an internal medicine specialist and gastroenterologist), but during his on-air explanation of glioblastoma and its standard of care, he failed to mention a revolutionary therapy for the cancer that’s FDA approved and clinically tested to show significantly enhanced survival beyond the current standard of care. It’s called Optune®, and it is a device that bathes the brain in electromagnetic waves that are believed to disrupt the cancer. (See more at novocure.com)
I point this out not as an indictment of the network or Dr. LaPook—both are well respected and great sources of information—but rather as evidence that even at the highest levels of public awareness, the identity of glioblastoma and its attendant therapies run silent and deep, a situation that surely can be remedied by raising the profile on the disease and the breakthrough therapies on the market and in the discovery phase of research. As I’ve said many times about such aggressive cancers, there should be nothing standard about a standard of care that achieves such poor results.
Branding a disease by linking it to a person (e.g. Woody Guthrie and Huntington’s Disease), a group of people (e.g. Legionnaires’ Disease and a type of pneumonia that first occurred at an American Legion convention in 1976) or even a place (e.g. Lyme Disease and Lyme, Connecticut) are not the ideal ways to draw awareness and create dialogue about an obscure condition because the names do nothing to articulate the pathology or the right course of therapy. However, they are better than nothing. While Senator John McCain’s diagnosis is sad and tragic for a man who has already suffered so much in his life and for his country, his celebrity fosters an opportunity to magnify the incidence, diagnosis, treatment and support for a brand of killer unknown to most, but potentially revealed to the masses as John McCain’s Disease. Spread the word #johnmcainsdisease.
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