Ideas are Welcome

Last week I met Dr. Greg Dworkin - in the flesh - at the HHS Pandemic Leadership Forum. It was nice to put a face to the man whose postings I have read on this blog. His comments at the forum highlighted his unique insight into the importance of the flu blogging community. As founder of FluWiki, Greg is clearly a respected “elder” in the pandemic influenza blogging community. He has helped me understand the power and unique importance of the flu blogging community and its collective voice.

I have learned a lot from the comments I have read on the blog and my conversation with Greg last week. In my first posting, it was not my intention to dissuade advanced preparation or to down play the gravity of pandemics. Advanced preparedness is critical and individual preparedness and a culture of self sufficiency are essential. No one can afford to wait until after an emergency begins in order to prepare.

No one can predict with certainty what the next pandemic will look like. There are no guarantees or promises that can be made regarding its impact on society. The next pandemic may be mild, as in 1957 and 1968, severe, as in 1918, or somewhere in between. The next pandemic could even be worse than 1918. There is simply no way of knowing.

It’s important to know that the Federal government alone cannot respond to and address the unique challenges brought on by a pandemic. We are urging a sense of shared responsibility, as it is the only way we can help each other, those less fortunate, and ourselves. Shared responsibility includes all levels of government, private sector, civic organizations, businesses, faith-based communities, education sector, communities, families, and individuals.

Social media, whether it’s blogs, wikis, or message boards, are places where people gather, share and seek out information. Through this blog, the Department has learned the importance of these channels in providing and facilitating sharing of information. We intend to continue engaging the public in pandemic flu communications and planning. Your ideas are always welcome.

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Prepping For Your Pets, And Other Flu Stories

One great thing about the internet is the variety of angles one can take to look at the same issue. Here at the Pandemic Flu Leadership Summit, we tackled some substantial issues such as the wisdom of communicating H5N1 preparation vs. an any-pandemic prep vs. an all-hazards prep. Each approach has merit. We all recognize that were it not for H5N1 and its virulence and threat, this HHS summit and blog would not exist. We also recognize that H5N1 is not guaranteed to be the next pandemic virus (it could be an H7 or an H9 or a more common H2). We further recognize that even for those who agree to apply the precautionary principle (action to reduce risk should not await scientific certainty), an all hazards approach may be necessary and prudent for the widest buy-in that does not dilute the result (and that last bit is key, since the goal is to get folks to adequately prepare and not to come up with a plan that is insufficient in scope).

With that in mind, and always on the lookout for best practice, Minnesota’s Code Ready program is worth highlighting. As the Strib relates:

Box upon box of pasta and rice, a couple hundred cans of fruits and vegetables, 120 gallons of water. Powdered milk. A first aid kit. A lantern. A weather radio. Plastic sheeting. Duct tape. Bleach.

All in your basement.

State health and public safety officials want Minnesotans to stock up in case of a flu pandemic, terrorism emergency or other widespread disaster. They’ve launched a $500,000 state campaign dubbed “Code Ready” encouraging Minnesotans to develop plans of action and assemble survival kits for emergencies small and large — from three days to a year.

I had the opportunity to discuss this with a spokesperson for the Minnesota Department of Health, who described to me many of the same discussion points (all hazard vs panflu) in preparation for the web site, which features a prep calculator based on family members, their ages, and, yes, pets. You can choose to build a prep kit for 3 days, a week, a month, or a year. The idea is to get started and then build. While this way, both all hazard and flu prep users can custom build their preps to suit their needs, pandemic flu was the issue that drove the project. More from the Strib:

As of last week, about 1,700 people had gone through the site’s pages to create their own kits. Ten times that number have viewed parts of the site, officials said, with hits coming even from Asia, Africa and Australia.

There’s been another 5,000 contacts in the offline awareness campaign. In addition, a survey done by the University of Minnesota last September for baseline purposes, and repeated this coming September, will look at Minnesotans and their prep attitudes, and whether the campaign has had impact.

Including pets in the equation seems like a great addition. Without that emotional kick (be it pets or kids), the reason to use the kit falls flat:

“It’s ridiculous. It’s just way too much stuff for anybody to have at home. I can’t imagine what they’re having us prepare for,” said Tracy Eberly, who lives in south Minneapolis. “If society breaks down to the point where we need all that food, trust me, we’ve got other problems.”

Nonetheless, there’s a start here that would be great to see everyone make. After all, there’s going to be a need for food AND addressing of those ‘other problems’ should a category 5 pandemic break out. That’s why planning needs to be so extensive, and why it needs to be done in advance, and if it can be done in a way that changes attitudes as well as supply facts, all the better.

That “pet planner” addition may be the necessary tool for more than a few to take this issue seriously. And maybe it’s a good way to bring veterinarians to the table, and add another professional society to the mix. Right now, whether it’s, CDC, HHS, the states or the professional societies, we need information out there for the public from every credible source we can get. Many voices, one message: panflu prep is necessary, important and possible. After all, your pets and your children expect and deserve nothing less.

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The End Of The Beginning

As the memory of those parting airport thunderstorms fade, what remains are the positive experiences of the recently conducted HHS summit. This isn’t about being nice (or not nice) to HHS, but rather an outcomes focused look at tangible and intangible results.

From CIDRAP’s reporting on the conference:

At a press conference that followed the forum, Stephanie Marshall, director of pandemic communications for HHS, said the agency would launch two more personal-preparedness promotion efforts in the months ahead. Later this summer officials will release tool kits, tailored to four different sector (business, healthcare, faith, and civic), that leaders can use to teach people more about pandemic flu and what they can do to prepare.

Marshall told CIDRAP News that the forum yielded ideas that will help HHS tailor the tool kits for each sector. “We received a lot of thoughtful input yesterday,” she said.

In the fall, HHS will target 5 to 10 diverse communities for more intensive communication campaigns about personal preparedness, Marshall said. “We certainly would like to include the appropriate representatives from the leadership forum and blog summit in these localized efforts,” she added.

And as for my own participation,

Greg Dworkin, MD, who took part in the leadership summit and is one of 13 experts who have led the blog discussions, told reporters he lauds the HHS for offering such an open live and online forum. The sometimes heated blog postings over the past weeks show there are many interested people who want good information from a federal source on individual and family preparedness, said Dworkin, founding editor of the FluWiki Web site and chief of pediatric pulmonology at Danbury Hospital in Danbury, Conn.

The HHS leadership forum helps validate the efforts of the many people who have already heeded pandemic warnings and started preparing their communities, their families, and themselves, he said.

I never describe or think of myself as an expert. But I do know the blogosphere, and the posts I refer to are not just at this blog, but at others. In addition to Flu Wiki and Pandemic Flu Information (good – but not the only – places to take the temperature of flu bloggers), here are some other reactions:

Pandemic Flu is not something I think about
By Denise, 12:18 pm, Thu 14 Jun 2007

… Pandemic flu doesn’t sound like a very interesting topic to spend a couple of hours blog surfing, does it? Well it is - very interesting. Don’t take my word for it, go surf it yourself.

and

Leadership and Moral Courage

…Vocal Flubies from all over Flublogia descended with the energy of a burst dam. We are a passionate and opinionated lot we Flubies. Our voice was finally going to be heard and we were determined to make it count.

I think the bloggers and the blog officials will be awhile recovering from the force they released. If you haven’t yet, and I just can’t imagine that to be the case, drop by the HHS PFLF and have a read. As has happened any number of times in Flublogia, History was made, yes history with a capital “H”. Now we will just have to wait to see if it’s a sympathetic and meaningful history or simply a sad footnote.

You might add impatient to passionate and opinionated, but then again, this is simply a slice of the American public. Try talking politics or baseball dispassionately.

Finally, there are pleasures (Sister Patrica Talone is as warm and approachable in person as she is online) and regrets to share (Nedra Weinreich and Michael Coston and Pierre Omidyar, among others, were not there for their wisdom and counsel, and I didn’t meet some of the other blog participants, though I read them all) . The participants, too numerous to mention, taught this so-called expert things I didn’t know every time a comment was made and an idea discussed. These human contacts are worth far more than any press conference or single blog post. And they mean most when we use those contacts going forward to build a message of pandemic preparedness.

You can’t push the public ahead of where they are ready to be, but you can’t use that as an excuse to not make the effort, however difficult it is, and however far uphill. Also, tactical disputes should not obscure broad agreement on strategy. Those of us committed to the idea that pandemic preparedness is an important message will use whatever tools are available. If HHS provides them, terrific (I love when someone makes my job easier). If not, we will make our own. If we fail at any of it, we will simply learn how to fail better next time (fear of failure is no reason not to try). And that, ladies and gentlemen, is a commitment.

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Looking For A Catalyst

To anyone expecting that Secretary Leavitt would step up to the podium yesterday, wave a magic wand, and radically change government pandemic policies, I suppose yesterday’s summit was a bit of a disappointment. Magic wands are in short supply in Washington, and rarely are Cabinet Level officials issued one. They must, regrettably, rely on mere mortal powers when running a Federal agency.

For many of us though, despite not quite knowing what to expect out of yesterday’s proceedings, I think we came away at least a little impressed. Yesterday’s summit wasn’t about issuing guidelines or official pronouncements, it was about engaging the private, business, and faith based sectors in a dialog on the need for pandemic awareness. It was about seeding a grassroots movement, something quite out of character for a government agency.

In fact, in some ways, it could be viewed as revolutionary.

While one could carp that this comes 18 months too late, and that we’ve wasted precious time, those observations only come with the advantage of hindsight. When the HHS put up the www.pandemicflu.gov advisory site in late 2005, they undoubtedly believed, if they built it, people would come. After all this was the all powerful Internet!

And some people did come, just not the droves of Americans they were expecting.

I suppose, if the government had promoted the site as containing “Barely Legal” information, and that all pandemic projection models were at least 18 years of age, they might have driven up their numbers. But it would hardly have been befitting a government website.

No one could anticipate that the media, usually known for doggedly beating a dead horse, would abandon the bird flu issue so easily. After all, a pandemic has all the elements of a great story; a potential for death, disaster, the shaking of the very foundations of some nations . . . . why, it ought to have played in every newspaper and magazine non-stop for years. But it didn’t.

After a brief initial furor early in 2006, when a pandemic didn’t break out, the newspapers forgot about it. The story, admittedly, isn’t an easy one for the mass media to cover. It often moves at a glacier pace, much of the `action’ occurs in remote areas of the world where few reporters have access, and with the exception of a few dedicated flubies, most of the public simply doesn’t care about the latest genetic sequences or the seroprevalence studies on cats in Jakarta.

We hear more about the Natalie Holloway murder, now two years passed, than we do avian flu on some news networks. Paris and Britany will sell papers and boost ratings, so there is no need to devote precious resources and airtime to a story like bird flu. At least not until something dramatic happens.

Thankfully, we’ve got a few good reporters out there. Stalwarts like Helen Branswell and Maryn Mckenna, who provide serious reporting on the subject. But few citizens read these articles, and meanwhile, headlines disingenuously report on vaccine breakthroughs and States declaring they are `ready’ for a pandemic.

And in Washington, pandemic preparedness is basically an orphan issue. Few politicians will mention it, and since it doesn’t resonate with the media, or the citizens, few are likely to embrace it.

It’s no wonder that the perception out there is that a pandemic isn’t a problem.

All of this must, I imagine, be a great frustration to those at the HHS. They obviously want to get the word out to the American people, and appear to be stymied by a lack of public and media interest. I don’t think they saw that coming.

And to be honest, it is one of the perpetual gripes of flublogia, “Why doesn’t the media cover this!”

Not being privy to the internal workings of the HHS, I can only assume that after 18 months of relative inaction by the public, and being virtually ignored by the mainstream media, desperate times have inspired desperate actions. Or if not desperate, at least innovative.

If the media is largely ambivalent, and the public apathetic, then no amount of cheer leading from the sidelines by the HHS is likely to make much headway. Funding for pandemic preparedness projects will be slow in coming, because the public isn’t demanding it, and the newspapers aren’t editorializing for it. Politicians, seeing no upside to talking about a pandemic, will remain silent and leave it to agency heads to do the talking. And of course, the agencies are hamstrung by a basic lack of public support.

The only solution is to go to the people, and get them involved. By bringing in community leaders, and instilling in them the need to go forth and spread the word on our need to prepare, hopefully they can create a groundswell of public action. Only then will the news media decide this is a story worth covering, and only then will politicians see it is to their advantage to promote pandemic preparedness.

Granted, it’s a roundabout way to make something happen, but given the lack of traction the message has achieved in the last 18 months, it makes sense to try it. Since the top-down model hasn’t worked as well as they hoped, might as well add some bottom-up strategy. Perhaps the two can meet somewhere in the middle.

While I know many were expecting more out of all of this, I think we maybe got more than we realize. We’ve got a clear clarion call from the Secretary of HHS, to go forth into our communities and spread the pandemic awareness message. We’ve been validated, at least unofficially, as being partners in the national effort to prepare for a pandemic. And our voices, for the first time, have been heard on this issue.

I suspect we may have surprised a few folks with our knowledge, our passion, and our dedication.

The reality is; no one is going to get everything they want out of this leadership summit. Many questions will go unanswered, many policy decisions will be withheld pending consultation and review, and concrete results may yet be months away. This experiment, like all experiments, was conducted without knowing in advance what the end result would be.

The HHS is mixing ingredients, looking for a catalyst that will spark a reaction among previously inert components. Praying for cold fusion in a test tube. We can be that catalyst. Regardless of how we feel about what has, or hasn’t been done to date by government agencies, we can take the lead in our communities and promote pandemic awareness. If enough of us do that, we can start a groundswell around the nation, and hopefully show the rest of the world how it is done.
Despite some early hitches in the process, and a miscommunication or two along the way, I’d have to say the Leadership Summit has advanced the ball down the field a bit. We have recruited a few more community leaders into the fold, and we have engaged in a open, and often spirited conversation with a Federal agency.

To me, that sounds like a win.

For those ready to wash their hands of involvement if the HHS doesn’t advocate 90 days stockpiling, allow me to suggest that as private citizens, we have the latitude to augment official recommendations with personal advice and knowledge. Freedom of speech is a wonderful thing, is it not? And most people who hear the message of `at least two-weeks’, and then are presented with the rest of the facts of life during a severe pandemic, will add 2+2. We needn’t beat them over the head with the obvious.

The important thing is to get the basic message out. Any litmus test, however well intentioned, that prevents that from happening is simply counterproductive.

No, we’ve not arrived at any final solutions, and the path before us won’t be an easy one. Going forth into our communities to spread the pandemic preparedness message may involve some personal sacrifice.

But if a pandemic brings what many of us fear; this could well be the most important jobs of our lives.

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