Week 3: Getting the Job Done
Are there existing programs that I am aware of that might be useful to helping to communicate the importance of personal preparedness for pandemic flu? How can they help? What is it that motivates me to lead and how can this knowledge help me to motivate others to lead as well? Who else in my community would I want to be engaged in this issue?

Preparing for Pandemics: What Do We Need To Do Now?

Since September 2001, there has been a crescendo of concerns raised about the nation’s ability to prevent, plan for, respond to or recover from large-scale disasters. In addition to the 9/11 terror attacks and Katrina’s devastation of the gulf nearly two years ago, we have been confronting the possibility of other catastrophic events which could have similar or even greater potential to wreak havoc among our citizens. We’ve amped-up our focus on the potential for a variety of disaster scenarios, including massive earthquakes, more failed levees that could result in disastrous flooding of populated regions and the ever-present spectre of a biological catastrophe.

Beyond the unsettling periods in our history when the world stood on the brink of nuclear war, few “potential crises” have received as much attention in the media, in government and within the public health community as has pandemic flu. And the more we’ve read about infected birds and domestic fowl in many parts of the world, and about the rare, though lethal human infections, the more we’ve paid attention. Rightly so.

The response to growing pandemic concerns has been, if nothing else, fascinating. Most, though certainly not all, scientists validate the concerns. Most, but not all, of the public health community feel the concerns are justified. If not H5N1, many say, some other virus with the potential for rapidly spreading lethal infection across the planet is a statistically - and biologically - likely event. So, with all of this in mind, where do we stand now - and what’ s next as we plan for the appropriate response and potential mitigation of a pandemic, whenever it occurs?

Clearly, the response by government at all levels has been intense, especially so on the federal level. The plans put forward by HHS, for instance, are essentially unprecedented in their complexity and scope. And resources have been made available by the Administration and the Congress (where there has been a surprising degree of cooperation on this issue.) And that’s clearly a good thing.

Yet, I remain very concerned. here’s why:

First, as I have saying for nearly two years, the resources appropriated remain insufficient to meet the challenges and guidance provided by HHS. Let’s assume that by the end of FY ‘08, nearly $9 billion will have been made available from all sources for pandemic planning. The fact is that most of the money will be used for vaccine development, stock-piling of appropriate medical counter-measures and some bolstering of public health infrastructure. And those are certainly important priorities.
But the problem is that we will need the response and treatment capacity of our hospitals and health care facilities to be in optimal condition if and when we actually experience a serious pandemic. And, if we continue along the track we’re currently on, the hospitals will not, in the foreseeable future, be ready. Money to support disaster readiness in our 5,000 hospitals across the nation has been dropping and currently appears to be in the range of $419 million for the next fiscal year. But an independent study of the issue by a national expert panel said that the hospitals would need a one-time investment of more than $5 billion to start the process and another billion a year to sustain an appropriate level of “pandemic readiness”. Can that money “appear” outside of federal support? The answer is “no”. There is no option for our hospitals - so many of which are, to say the least, economically fragile. And few states will have the resources to provide funds at the level that would be needed to compensate for extreme inadequacy of federal support.

My second concern has to do with a much broader agenda of setting overall national priorities. What precisely should we be most concerned about? Is it the growing “epidemic” of obesity and the health threats posed by this reality - or should we be most focused on making sure that all Americans get basic health care? Should we be worried about individuals without access to the health care system being undetected and untreated in the event of a major pandemic? What about the rapidly aging population in the U.S. and the soaring impact of Alzheimer’s disease and other chronic illnesses that will require enormous investments in research and appropriate health care access?

On some level the idea of having to make such choices is an anathema to Americans. We have a large agenda, all of which can be seen as critically important. And should not have to choose between pandemic preparedness and our ability to care for the nation’s senior citizens. Health and preparedness should not be a zero-sum game.

What then is the answer?

There is plenty to talk about, but I have two specifics in mind. First, in the absence of an effective, ubiquitous capacity to rapidly produce a protective vaccine, the need to ensure a robust health system response is critical. The money to make this possible must be made available.

Secondly, every investment in health and public health preparedness should be analyzed in terms of dual- or multi-use potential. Pandemics are far from the only disaster we might be facing in the future. And improving laboratory diagnosis capabilities, for instance, across the nation could have untold benefits, and so forth.

The bottom-line is that we are not close to being ready to respond to a serious pandemic threat in the U.S. - or, for that matter, in the world, generally. And if we are serious about our concerns, then the plans, the priorities and the resources have to be much more in line with the rhetoric.

Irwin Redlener

Top Down, Bottom Up, Side to Side

Should the emphasis of a campaign to raise awareness of pandemic flu be on top-down government-led information dissemination, or should we rely on grass-roots efforts to spread the word from person to person? The answer is: absolutely!

Much of the limited awareness-building that has happened to date has come from individual concerned citizens who hear about pandemic flu, realize that this is a real threat and take it upon themselves to educate others in their community. But because of the lack of pervasive communications by the government and other high-level credible sources, their exhortations to take action may be dismissed as alarmism.

An effective initiative must use a dual-pronged approach. The institutions and people whom various audiences look up to as credible sources of information about public health issues have to speak out loudly and often about pandemic flu. Right now, the information is available, but only if people go looking for it. These credible spokespeople need to reach people where they are, whether that means having the Surgeon General mailing a postcard to every American household, HHS creating television and radio ads, working with Oprah to do a “community preparedness makeover,” featuring a pandemic flu storyline on 24, or distributing millions of grocery bags with preparedness tips through participating stores.

This blog has been a good attempt at a start to reach out online, though most of the people participating are already knowledgeable about the issue. The PandemicFlu.gov website is an excellent source of information, even if not everybody agrees with the recommendations for stockpiling. However, the site, which looks like it was created by a committee of 20, is crying out for a redesign from a user-centered design standpoint. Anyone who comes to the website without knowing exactly what they are looking for would be overwhelmed by the information overload on the home page. Different audiences need start pages customized to their specific needs, and they should be usability tested with people who are new to the issue of pandemic flu.

A centrally coordinated education campaign that reaches as many individuals and community leaders as possible will go a long way toward creating awareness. But people will be much more likely to take action when they see that other people like themselves are taking the information seriously and getting prepared for the possibility of a pandemic. And speaking with a real person who can answer questions and concerns can break down many of the barriers that keep someone from taking action.

That’s where the grassroots approach comes in. A vibrant and engaged community of concerned citizens has developed over time in various places online, such as the Flu Wiki and the Pandemic Flu Information Forum. On their own, they have come together to share news and preparedness tips, and many participants have tasked themselves with educating their community leaders and neighbors.

Any effective effort should see this group of self-appointed community leaders as the core of a social networking strategy to spread the word from person to person. They are passionate about the subject, and can get the ball rolling through word of mouth if they are empowered through the social marketing equivalent of a “brand ambassador” or “customer evangelist” program. Give them resources (e.g., an online social network site, downloadable handouts and presentations, etc.) and official support to help get the word out, and they will be key to reaching local parents, city government officials, service groups, businesses and religious institutions. As other people are convinced through their efforts, they too may become supporters and share the information with their own social networks. I hope that HHS engages rather than ignores their best natural resource.

Although not everyone is online, social media will be a key to reaching large numbers of people and having the message spread. Many people have created and posted videos about pandemic flu on YouTube, which have been viewed thousands of times. There are many pandemic and disaster planning podcasts (no link because I found them on iTunes), blogs and the wiki and forum I mentioned above. A MySpace page could be created with a badge that supporters could put on their own pages that says something like “I’m prepared, are you?” The Florida Department of Health created a humorous campaign to promote hygienic habits geared toward reducing the spread of flu, which includes TV spots uploaded on YouTube and a MySpace profile page for the main character. Outreach to bloggers who reach key constituencies like moms, people interested in health issues, or policy-minded citizens may also result in more awareness.

When credible and urgent messages about pandemic flu are coming from “on high” that have been designed based on input from they people they are intended to reach, and people are empowered to talk to their friends, family and community members about the issue, awareness and preparedness will blossom. But take the grassroots out of the equation and we may be left with lots of words and no action.

SARS And H5N1: The Precautionary Principle

While we’re still in week 3, and looking at getting the job done there’s an important piece of this we need to get out on the table, and very relevant for answering the question “What do I need to succeed in communicating the importance of preparing for a pandemic?” It’s to take a look at the virus we know is out there, H5N1, and make sure it is central to our thinking.

This is a nasty, vicious killer of young people (90% of H5N1 deaths are less than 40 years old), and while we do not know that it is the next pandemic virus, no one can assure us that it is not. Mutations are a normal part of viral evolution, and the virus has changed since 1997 when it appeared, and 2003 when it reappeared, in Hong Kong. The next set of mutations can set off events we’d rather not think about, let alone experience. After all, the 1918 pandemic was bad enough with a 2.5% case fatality rate, but H5N1 has a 61% case fatality rate overall (80% in Indonesia). Those are staggering numbers to consider and comprehend.

Now, isn’t that just an alarmist way of looking at current events? isn’t it true that we don’t know for a fact that H5N1 will be the next pandemic virus? Well, here’s the thing. H5N1 is out there, and it is not going away because it’s established itself in the bird and animal population (cats in Indonesia are not excluded from this virus, and there’s speculation that they may have some undefined role in viral spread). Each human exposure is another chance for viral mutation. And we have an important precedent to look at, both from Hong Kong and Ontario. I am, of course, referring to SARS. And here, we have a blue ribbon review of what happened in Canada when SARS broke out, what was done, and what could have been done better.

The independent Commission to Investigate the Introduction and Spread of Severe Acute Respiratory Syndrome (SARS) was established by the Government of Ontario as an investigation under section 78 of the Health Protection and Promotion Act. Mr. Justice Archie Campbell of the Ontario Superior Court of Justice was appointed Commissioner.

The Commission investigated how the SARS virus came to the province, how the virus spread and how it was dealt with. Its final report was completed in December 2006 and made public on January 9, 2007. It was transmitted to the Minister of Health and long-Term Care on January 4, 2007.

Here’s an excerpt:

SARS had Ontario’s health system on the edge of a complete breakdown. The wonder is not that the health system worked so badly during SARS, but that it worked at all. SARS also badly hurt Ontario’s international reputation, setting up an unfortunate link in the minds of many in other countries between Toronto and a mysterious deadly disease. Worst of all, SARS demonstrated how many earlier wake-up calls had been ignored, and how few of their warnings had been heeded…

We must remember SARS because it holds lessons we must learn to protect ourselves against future outbreaks, including a global influenza pandemic predicted by so many scientists. If we do not learn from SARS and we do not make the government fix the problems that remain, we will pay a terrible price in the next pandemic. (bolded mine).

There were some specifics from the report that need highlighting (vol 1, p.16):

Common problems and themes emerge from the stories of both [hospital] outbreaks. They reflect seven systemic problems that run like steel threads through all of SARS, through every hospital and every government agency.
• Communication
• Preparation, planning
• Accountability: who’s in charge, who does what?
• Worker safety
• Systems: infection control, surveillance, independent safety inspections
• Resources: people, systems, money, laboratories, infrastructure
Precautionary principle: action to reduce risk should not await scientific certainty

Here’s more on the precautionary principle (page 10):

Perhaps the most important lesson of SARS is the importance of the precautionary principle. SARS demonstrated over and over the importance of the principle that we cannot wait for scientific certainty before we take reasonable steps to reduce risk. This principle should be adopted as a guiding principle throughout Ontario’s health, public health and worker safety systems.

H5N1 is a real threat. Robert Webster and Elena Govorkova , writing in the New England Journal of Medicine, said

Clearly, we must prepare for the possibility of an influenza pandemic. If H5N1 influenza achieves pandemic status in humans — and we have no way to know whether it will — the results could be catastrophic.

So, given what we know about the potential threat of H5N1 (which is considerable), and mindful of the precautionary principle, as well as the duty to inform, does it not make sense to prepare for worst case as well as mild case scenarios? It is in this context that discussion of how to stockpile (including suggestions of how long, and what, to stockpile, including medicines), and folding pandemic preparation into an all-hazards approach run into stormy weather. Planning for a worst case scenario ought to cover mild case scenarios and assist all-hazard preparation. Planning for a mild case scenario does no such thing. Mild scenarios do not consider loss of electricity, for one, or mass casualty events, nor do they consider the effect of illness on a vulnerable JIT economy. We will not be closing the schools for mild events (though they may close on their own when parents don’t send their kids – and don’t ever underestimate parents).

And while it is true that we can not predict the next pandemic, or whether H5N1 is the next pandemic virus, the precautionary principle suggests treating H5N1 as if it is. After all, that’s why there’s such interest in this topic in the first place. Let’s acknowledge it and move forward with that in mind. After all, preparing for H5N1 prepares for any pandemic we get.

Taking those First Few Steps

The thoughts I posted Wednesday on stockpiling mark my first entry into the world of blogging, and, I must say, I had no idea that it would spark such a strong response.

I have been working through all of your comments, and if you can bear with me as I learn more about blogging, I promise you that I will try to address the questions that have been raised.

To begin, I would like to return to the issue of stockpiling, as one component of pandemic preparedness. I believe that every family should have some sort of stockpile in order to be as self-sufficient as possible during emergencies, including a pandemic. Right now, however, many Americans have prepared very limited stockpiles, at best. Our goal with the blog is to encourage everyone to take a few steps now to begin preparing for a pandemic, including building a stockpile. Each family should customize their stockpile size and contents to meet their unique circumstances and needs. Naturally, the more time and effort that you put into preparing a stockpile, the more self-reliant you will be. We at HHS believe that two weeks is an effective compromise that can get all American families thinking about their own needs.

I am looking forward to reading your reactions and within the next few days will write about how individuals can minimize their risk of exposure to an influenza virus during a pandemic.

Please stay tuned.

Sr. Patricia Talone

Who Needs to Be Engaged?

Reading both the posts and the blogs these past two and a half weeks, I am keenly aware of the enormity of the challenge we face. As leaders, we have an obligation to assist those persons within our purview to prepare for a pandemic. Preparation involves information, education, decision-making processes, protocols, stockpiling, etc. etc.

But it involves other challenges far less tangible and yet every bit as important. Within my local community, and within the broader Catholic health care community with whom and for whom I work, I want to be sure that chaplains, spiritual care leaders, social workers and numerous volunteers are on hand to minister to those who are sick.

Anyone who has suffered a serious illness knows how helpless the sick person feels. Yesterday one was healthy, in-charge, free to come and go at will. Today, the same person is at the mercy of others for transport, bathing, cleaning and feeding. It is a tremendously humbling experience. While one longs for a skilled clinician, one is similarly deeply grateful for a warm smile, a gentle touch, a reassuring word.

Let me share a personal example to illustrate this point. In the 1918 epidemic, my father, who was one of ten children, lost his mother and oldest brother suddenly to influenza. His two oldest sisters were hospitalized but, thankfully, recovered. My grandfather had to shuttle between the makeshift hospital that housed four of his loved ones, and the seven younger children still at home. One of his greatest fears was that the hospitalized members of the family would die alone, without human comfort.

Fifty-four years later, I was living and working at the Sisters of Mercy Motherhouse outside of Philadelphia. A very senior sister stopped me one day and asked, “are you one of the Talones from Ardmore?” I responded affirmatively, and then queried why she asked. She said, “I cared for a woman named Marguerite Talone in the Bryn Mawr Hospital annex in 1918. We thought she was close to death, so I was praying with her. During that time her fever broke.” My aunt had survived the flu, but died fairly young, so I was eager to tell my father and his remaining sisters and brothers this story. They surprised me by arriving at the convent one Sunday, asking to see the woman who had cared for their sister. Sister vividly recounted the story of my aunt’s breaking fever. When they left her room, one of my aunts, in tears, said to me, “I can’t tell you how consoling it is to know that Marguerite didn’t awaken from the fever alone and afraid.”

I was reminded of this family memory when reading yesterday’s Washington Post. It had an article about a gathering of Church leaders in Fairfax County who met to grapple with the very real possibility of a flu outbreak. The group recognized that they, and their congregations, will play a key role in the event of a pandemic. While large religious gatherings will be discouraged to prevent further spread of the flu, sick persons and their families will require the kind of spiritual care that religious volunteers proffered during the 1918 epidemic. If we are to offer wholistic care of the sick during a pandemic, we will need women and men willing to sacrifice, not just their time and money, but their very selves, at the service of others. The gospel of John tells us that there is “no greater love” than this.

Next Page »