Friday, November 13, 2009
BOB GARFIELD: Hey, cyberchondriacs and other people with, you know, organs, crack open the champagne. It’s Pulmonary Hypertension Awareness Month! And the excitement doesn't end there. It’s also Lung Cancer Awareness Month, Long-Term Care Awareness Month, Alzheimer's Disease Awareness Month and National Marrow Awareness Month. In fact, as I reported back in June of 2006, even if you’re thinking marrow pretty much 24/7, there are so many afflictions that can catch you unawares.
BOB GARFIELD (2006 AIRING): Edgar Allan Poe said it best. "At midnight in the month of June, I stand beneath the mystic moon and contemplate the cruel unfairness of scleroderma unawareness." Okay. Poe didn't actually write that second part, but surely he would have if he weren't one of the majority of Americans woefully ill-informed on autoimmune disease, because awareness is a prerequisite for action, and June is, indeed, National Scleroderma Awareness Month. This is not to be confused with festivities surrounding other autoimmune nightmares, such as Multiple Sclerosis Awareness Month, which is March, Lupus Awareness Month, which is October, Arthritis Awareness Month, May, or Psoriasis Awareness Month, also October. Or maybe Poe wouldn't have found a life-threatening disease of the connective tissue fitting to wax poetic about. No problem. June is also Myasthenia Gravis Awareness Month, National Aphasia Awareness Month, National Cervical Cancer Awareness Month, Fireworks Safety Month and host month for Headache Awareness Week, Dystonia Awareness Week and Helen Keller Deaf-Blind Awareness Week. Yes, this is a big country, and there are many scourges of which to be aware.
JENNIFER BARRETT: You know, there are some awareness weeks where I look at the disease and I think, I'm not even sure I've ever heard of that.
BOB GARFIELD: Jennifer Barrett is health editor for Newsweek Magazine Online.
JENNIFER BARRETT: It does prompt me to do a little research in it, so I think in some cases it sort of puts it on your radar screen sometimes. It doesn't necessarily mean we're going to write about it right now, but it increases the awareness among the press.
BOB GARFIELD: Barrett articulates pretty much the best-case scenario for the ever-growing awareness industry, whose foot soldiers must battle other news, other diseases, general indifference and, in the case of June, also Potty Training Awareness Week and National Accordion Awareness Week to get Disease X on the national radar. The steward of these observances is Captain Penelope Royal, director of the Office of Disease Prevention and Health Promotion at the Department of Health and Human Services.
CAPTAIN PENELOPE ROYAL: The calendar has grown a lot since we started this in 1984, when we had 43 observances for the whole year.
BOB GARFIELD: This year, the number is 213, not counting the dozens of observances not officially sanctioned by HHS. The sheer number is problematic, awareness-wise, because there remain only 12 months, or 52 weeks, to vie for the nation's disease attention. For instance, Royal scanned her calendar and alighted on May.
CAPTAIN PENELOPE ROYAL: How about Neurofibromatosis Month?
BOB GARFIELD: Do you happen to know what that condition is?
CAPTAIN PENELOPE ROYAL: If you'll let me look it up, I can do that. Here we go: Neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural cell tissues.
BOB GARFIELD: Well, now I know about this disease. What am I supposed to do about it?
CAPTAIN PENELOPE ROYAL: Well, what is next? Are you going to call the organization and find out more about it? Are you going to write a check out to help them develop cures? Are you going to walk around your neighborhood and try to raise money for the group? Are you going to go to your child's school and promote awareness there? Are you going to schedule a physical examination for yourself?
BOB GARFIELD: The answer to all of these questions, depressingly, is no. She also might have added - are you going to devote a story to it? But the month of June is slipping away, and we media elites are inundated with disease-reporting opportunities. Richard Perez-Pena is metro health reporter for The New York Times. Are you working on anything about the fireworks safety?
RICHARD PEREZ-PENA: Actually, no. Fireworks are illegal in New York.
BOB GARFIELD: Scleroderma?
RICHARD PEREZ-PENA: Scleroderma, no.
BOB GARFIELD: Aphasia?
RICHARD PEREZ-PENA: Nope.
BOB GARFIELD: Myasthenia gravis, dystonia?
BOB GARFIELD: Headache?
RICHARD PEREZ-PENA: No.
BOB GARFIELD: Cancer?
RICHARD PEREZ-PENA: Uh, no. If there are awareness weeks or months about all of those, I'm unaware of them.
BOB GARFIELD: Because, he explains, while people like him may be generally familiar with various disease observances, they do not regard them as particularly relevant news pegs, partly because they are arbitrary and partly because no [LAUGHS] self-respecting journalist wants the news agenda dictated by outsiders, thank you very much. But did Perez-Pena, just a few weeks ago, not do a big metro front story about Hepatitis B smack in the middle of May's Hepatitis Month?
RICHARD PEREZ-PENA: I have a horrible admission to make. I had no idea that there was a Hepatitis Awareness Month. It never even occurred to me.
BOB GARFIELD: But it occurred to the Centers for Disease Control, which timed the release of the very study he was quoting for Hepatitis Awareness Month because, like big tobacco and big oil, big liver understands message management. And it understands the challenge of breaking through public ignorance and indifference. In a recent survey, the American Liver Foundation discovered that half the population doesn't realize that hepatitis is liver disease, and 90 percent believe that the major cause of liver damage is not infection but alcohol abuse. Fred Thompson is president of the Liver Foundation.
FRED THOMPSON: The liver community's done a very bad job of focusing public attention on what liver disease actually is, exacerbated by the fact that there are over a hundred different diseases, and many of those have their own little advocacy group. So there's a lot of fragmentation. And the liver community would be well served by bringing these various disparate factions together.
Easier for some organizations, than for other. The breast cancer pink ribbon campaign has captured the imagination of millions, likewise, Lance Armstrong's yellow wrist bands. And colon cancer awareness got a boost when Katie Couric's husband died of the disease.
FRED THOMPSON: Liver was kind of just sitting back there, while the other organs stepped to the plate and, quite honestly, have moved to the fore. We've got some catching up to do.
BOB GARFIELD: Do you lay awake at night wishing that Paris Hilton will get Hepatitis B?
FRED THOMPSON: Having a celebrity or somebody like a Paris Hilton and she happened to have liver disease and we could get her as a spokesperson, that would be probably very helpful. We all know what Katie Couric did for colon cancer. So we, we are hoping to find some celebrities.
BOB GARFIELD: God willing.
FRED THOMPSON: Yeah, [LAUGHS] God willing.
BOB GARFIELD: Relatively speaking, though, liver disease is still a marquee condition. Fred Thompson has it pretty easy next to Michael Beach, senior epidemiologist with the CDC's Division of Parasitic Diseases. Dr. Beach administers Recreational Water Illness Prevention Week.
MICHAEL BEACH: This year, not as much pick-up but, you know, in past years we've managed to make it on the morning TV shows and that sort of thing on the national networks.
BOB GARFIELD: Remarkably, despite the native unsexiness of swimming pool hygiene, Beach's office has generated millions of webpage views. But the fecal matter awareness message is a work in progress.
MICHAEL BEACH: We regularly have conversations about how can we make the message more tantalizing and still be able to be tasteful and go through [LAUGHS] an approval process.
BOB GARFIELD: Can you give me an idea of what's been rejected?
MICHAEL BEACH: [LAUGHING] No. [LAUGHS]
BOB GARFIELD: This brings us to Dan Bollinger, executive director of the International Coalition for Genital Integrity, that is, the anti-circumcision lobby. How would you characterize the general state of American genital integrity awareness?
DAN BOLLINGER: I think so many people are involved with the decision-making process – we're talking about millions a year – and certainly we need to have a million conversations about that.
BOB GARFIELD: Do you think there are a million conversations going on?
DAN BOLLINGER: There are. Unfortunately, they tend to be rather short and curt, like, well, should we cut him, or her? Well, I guess so, okay.
BOB GARFIELD: Yet despite the press releases and emails, the public service announcements and even an itsy-bitsy little march on Washington, the 2006 Genital Integrity Awareness Week came and went with barely a peep about it in the American media. And that - is the cruelest cut - of all.