The Bellagio Principles regarding planning for an influenza pandemic

The Rockefeller Foundation's conference center in Bellagio, Italy on Lake Como is a lovely place (digression: so I'm told by people I know who have spent time there. I haven't -- yet. This is a big hint to the Foundation that I am available to take a week there and tell you what I think. Or you can find out for nothing here. But I'd rather tell you in person.).

In June Ruth Faden, a bioethicist at Johns Hopkins convened a group of experts there to talk about ways to soften the impact of a flu pandemic on the world's most vulnerable:

"Within countries rich and poor, the burden will be felt most by the poorest in those settings," Ruth Faden, executive director of the Berman Bioethics Institute at Johns Hopkins School of Public Health, explained in an interview.

Faden and some colleagues from Johns Hopkins organized a week-long meeting held [at the end of July], which drew ethicists, public policy specialists, influenza experts and officials of the United Nations, the World Bank and World Health Organization.

[snip]

The aim was to brainstorm on whether there are ways to mitigate the impact a flu pandemic would have on society's weakest members.

"The premise going in was . . . a shared set of assumptions that are pretty safe bets, that no matter how this falls out, the burdens - economic and social as well as in terms of burdens of disease and death and disability - will not fall equally across everybody on the globe," Faden said.

"These burdens are going to fall hardest on the people on the bottom."

She said the group understood it could not find fixes for inequities steeped in poverty, racism or sexism. But it felt it might be able to help put the special needs of disadvantaged groups on the pandemic planning radar. (Helen Branswell of Canadian Press)

The group drew up a set of principles for planners and policy makers, with issues of special concern the burdens of current control measures, like culling of backyard flocks and restricting the movement of people out of an outbreak area. On paper these measures look rational and reasonable, but on reflection it is clear they fall hardest on the poorest of this world. Most people in the developed world don't have and depend on backyard poultry flocks, and restricting movement uses police powers we all know are differentially enforced. If there were to be a quarantined region in the US (highly unlikely, but it's been talked about), we know the well off will evade it with ease and impunity while the poor will be trapped within a cordon sanitaire (see a previous post here).

But it's not just backyard flocks and quarantines in the developing world:

Well-to-do and middle-class families would likely be able to manage if schools are closed to slow spread of a pandemic virus. But single working parents could have to choose between work and caring for their children, and kids from low income families who rely on school meals could go hungry.

Likewise, telling people to stockpile food is only a useful recommendation for those who can afford to buy additional foodstuffs - and have a place to store them.

"A general recommendation for people to do X, Y and Z only makes sense if people have the resources to do those things," Faden said.

Similar recommendations that people with prescription meds lay in a three month supply also don't work for the many uninsured or those whose insurance will only pay for a month at a time.

The Bellagio Statement of Principles notes in the Preamble there are practical reasons as well as ethical ones to concern ourselves with this:

Consideration for the interests of the disadvantaged is important for practical as well as ethical reasons: public health efforts are more likely to succeed in an atmosphere of social solidarity and public trust, including the trust of disadvantaged people. Avian and human pandemic influenza planning and response should therefore not only be based on sound science and public health principles, but should also respect and give particular attention to the needs and rights of the disadvantaged, and include processes through which their preferences and interests can be articulated and incorporated.

Here are the Bellagio Principles (also available at the site in Arabic, Chinese, French and Spanish):

Principles

I. All people should have ready access to accurate, up-to-date and easily understood information about avian and human pandemic influenza, public policy responses, and appropriate local and individual actions. Communications should be tailored to overcome obstacles that disadvantaged groups face in accessing such information.

II. Veterinary and public health strategies should foster wide engagement in planning for and responding to the avian and pandemic influenza threat. Civil society, religious groups and the private sector should be involved in helping to overcome barriers to effective engagement by disadvantaged groups.

III. Planning and response should facilitate public involvement in surveillance and reporting of possible cases without fear of discrimination, reprisal or uncompensated loss of livelihood. Recognizing their vulnerability, special efforts are needed to foster reporting by disadvantaged groups, as well as to protect them from negative impacts which could worsen their situation.

IV. The impact and effectiveness of interventions and policies need to be evaluated and monitored, especially with respect to prospects for providing fair benefits to, and avoiding undue burdens on, disadvantaged groups, so that corrective adjustments can be made in a timely manner.

V. Developing as well as developed countries should have access to the best available scientific and socio-economic data and analyses to inform avian and pandemic influenza planning and response, including information on the particular burdens and secondary harms that a pandemic and pandemic responses may inflict on disadvantaged groups.

VI. National and international efforts are needed to promote equitable access to vaccines, antivirals and other appropriate public health and social interventions, both between and within countries, so as to provide fair and non-discriminatory treatment for traditionally disadvantaged groups as well as those who are specially disadvantaged in the context of avian and human influenza.

I don't think anyone is kidding themselves that the poor won't bear the brunt of a pandemic, Bellagio principles or no Bellagio principles. But talking about this is the right thing to do and most welcome. It will likely result in some adjustment to thinking in some places. Better than nothing.

Hats off to the Bellagio conferees.

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Note: Haber's modeling studies (Emory Univ)showed that closing schools does not mitigate the spread of a pandemic. I have his presentation in a pdf if anyone's interested--should be published shortly.

One thing that concerns me in any kind of pandemic is that drug supplies will be completely interrupted for several months. The collateral damage could exceed deaths from bird flu. Tally up the following: type I diabetics; transplants; patients requiring blood thinners, BP meds; at-risk cardiac patients; renal dialysis. . . the list goes on.

Marissa,
I would be interesting in a copy of the Haber presentation pdf. How can I obtain one?

Revere: another excellent posting of yours, like many of you last weeks. Thank you.
It has been my concern for some time since I heard of bird flu that the poor will be the first in line to get a full blow of H5N1. E.g. not having a computer and access to the internet is just one big step behind in getting information and time to prepare. This posting supports my thoughts preparing is also getting our political systems to engage and inform the poor men in the street. But now I realize it's also the other way around. When EVERYONE gets informed it gives the opportunity to mobilize the political power bottom-up to influence the government on a fair decision taking about regional preparing measures.

As I am getting more stress every day when I see the government (by now I'm speaking about the Dutchies, but it could apply to other countries as well) doesn't supply information to all citizens, I am considering what their motives for this censorship could be.
Yes, government and civil private groups and religious organizations who told me they won't scare people: informing all people would create a lot of unrest in society. But after the initial fits of fear the process would continue and a lot of if-pandemic thinking would occur. It would help people discussing what the impact would be and what they would need in the first place.
Moreover people would stand up and demand measures to be taken by the government to in fact HAVE the medicines for chronically ill people who couldn't afford to stock, to HAVE some kind of administrative and delivery system to get it at the right place to the right people and to CHANGE policy decisions that could influence the vulnerability of society during a pandemic in very variable ways (like supporting local farmers to produce for the region instead of becoming more dependent on monoculture import products in the European Efficiency Catastrophe). (And for the US citizens, to curb the dependency of 80% of the basic ingredients for the production of their medicines from over the ocean.)
By the way, it's not only the physically ill who need their medicines on a regulare base, but also the psychiatric patients (depressed, psychotic, ADHD, phobic people) who would live in a hell when they shouldn't get their pills. And for the women, any contraceptive could be a nice idea, too. But that's going to be a bit off the line I am after here.
I am convinced people need all information to influence their government decisions NOW and not during a pandemic. One can be frightened thinking about the aggression that will be in the streets when the Big Flu is there, but it's also caused then by the lack of all that could have been done to survive, done by the people themselves and by the government for the most wanting groups. Actions that have been deleted and blocked away from a huge part of society by the actual debilitating censorship from the government, deafening silence from secretly rehearsing civil services like waterworks and hospitals (at least in my country), and falsely reassuring newslines in the media.
I think the actual approach will surmount in a almost predestined form of violence coming from mourning the death, from hunger, from cold, from being fooled.

So the first principle from the Bellagio conferees described as informing people IMO is badly needed in order to give/preserve for people their autonomy and emancipation, and it will help to get the other Principles in action. They formulated their principles very well
nuanced but not to be mistaken.
Well, their message is a very progressive one, and it certainly will change a lot in politics and in society - if it ever will happen - but most of us maybe agree on it to see some development in their way preferably before instead of after a pandemic.

Marissa, I think the collateral damage is not only in all chronic patients who would not survive, but also in heavily armed criminals who would rule the world and implement systems of slavery and abuse and in a lot of culture and civilization that would be gone for ages.
I certainly have a lot of critical and sometimes depressed thoughts about what's going on in the world, but it could be a lot worse.

The absolutely poorest people in this world don't even have safe drinking water far less sufficient food. Getting them to pay attention to H5N1 may prove challenging. Tan, I expect the governments that can get the info out to all realize that people have such a short attention span the 'panic now' command has to be carefully timed for when the issue looks like gathering momentum, or we may end up with a cry wolf situation.

Yes, the relatively poorest people (in developed nations) will probably bear the brunt of any pandemic, however we may find that like our 'helpless' domestic pets their instincts will serve them better in the wild than the dulled instincts of the university-educated desk jockeys. Fighting, stealing, lying and so on just to survive. Practice makes perfect. They have much less to lose and their lives to fight for. This isn't a judgement, just a long-term observation, and I think it is something the more well-off know deep down and fear.

Many of the poorest in the workforce are also cleaners, garbage collectors, food industry workers and do all the grotty jobs that no-one else wants to do - but if they didn't get done we'd soon notice. Even the super-rich rely on them to hold the fabric of society together and keep their businesses running, or provide cheap labour in countries to which work has been outsourced.

The recommendations are laudable, but I cynically wonder if looking after the poor is a way of preserving the comforts of the better off. However, right or wrong, I can't imagine any government would be prepared to sacrifice a significant chunk of its skilled workforce so as to provide equitable treatment to those it perceives as a drain on its economy.

The Bellagio principles sound lovely on paper, but in fact I am afraid none of that will ever happen. If there is a severe flu pandemic, it's going to be chaos and no one to enforce these principles.

I actually think the segments of the population that will do best are the very very rich - who can afford to isolate themselves and have everything they need for months on end - and the very very poor who are already relatively isolated - subsistence farmers, fishermen, hunters and gatherers. The rest of humanity, from the upper middle class down to the working poor and non-working poorer - particularly those living in overcrowded urban areas totally dependent upon trucked in food and processed water -will be hit the hardest. And it will be every man for himself...so possibly those who live in poverty and are a little more street smart, a little more used to urban warfare and taking what they need to survive, may do better than those up the economic food chain a bit, push comes to shove.

By mary in hawaii (not verified) on 30 Sep 2006 #permalink

M in H....Amen!If it comes in High Path and in fast fashion in waves, it will break the system down piece by piece and not just here in the US, but worldwide. Some aborigine in Australia may just know that his family got sick and died, or by isolation by natural environmental condition they never get sick at all.

History is going to judge us all on how we prepared and how we helped one another during and after this happens. The 8% number looms and thats basically the point of no return. MIH have the kids got a back up plan yet?

By M. Randolph Kruger (not verified) on 01 Oct 2006 #permalink

MRK...no plan yet, but I arrive in So Cal tomorrow evening and will do my best to ensure they have a good one in place before I fly back to Hawaii a week later. In the meantime, I spent the day writing FEMA officials, congresspeople and newspapers with the proposition that, among other things, the US govt should create emergency supply cards (like USDA food stamp cards, only good for a whole list of emergency supplies at stores) and give these out NOW to all low income families, with the understanding that the cards will only be activated and usable if and when the WHO decides that a pandemic is imminent. That at least would make it possible for the poor to gather up necessary survival supplies a bit ahead of the game. It would be a very low expense to the government if the flu fails to materialize, but could save hundreds of thousands of lives if a pandemic hits and people are already prepared. Plus by putting these cards out it sends the message - low key, but clear - to the rest of the populace that it might be prudent to take this threat a little more seriously and prepare themselves. The other key thing I suggested was that the government set up in every community a place in which bottles of drinking water could begin to be stockpiled well ahead of any emergency. It's not like it's going to go bad, and without adequate drinking water no one can survive for very long, so ensuring everyone has drinking water is a top priority. This is particularly important in areas where there is not much rainfall (So Cal, Arizona, Nevada, New Mexico etc.) I don't see the point in even mentioning medical care, it's just not going to happen. I've also posited the idea to my charter school network group, suggesting that our schools step up to the plate and act as the focal points to spearhead community flu preparedness efforts. I'll work on this more when I get back from California. You're right about how history - or simply our own consciences - will judge us regarding how we helped one another during and after this. I'm working on it now, as I really hate the feeling of guilt.

By mary in hawaii (not verified) on 01 Oct 2006 #permalink

You know MIH we get into it every now and then but the object of the game is the same, get thru it. That card thing is one hell of a good idea. I dont think they should pass them out now, only identify them. The chance at infection to pass them out would be low and the mail will still run for at least the two weeks that it would take to move them.

I will run that one up the flag pole and see who salutes it.

Time for Mom to get really nasty. 10 people presented with the same facts will generally break it down like this 1 never get it, 7 will make the same decision as the next guy as how to handle it, 1 will come up with a truly remarkable fix, and the last will be asking for more detail when the tsunami rolls in. It reminds me of Independence Day when Randy Quaid falls out of the police car saying, "Get as far away as you can." That might not be too far off the mark about So. Cal. So get ugly with them. I just cant see at even an 8% factor that things in that area would be too terribly advantageous. Warlords might appear and as you say everything is trucked in. Those trucks cease to function for any reason and California could become nothing but a death zone.

You kids are in LA area I guess. I suggest the Hualapai Indian reservation up on the Colorado River west side. They could make it in a day. Water, game that generally doesnt get it, and remote Mary? We are talking about as sign on the way that says, "Welcome to Jurassic Park." They have a hotel there and are VERY self sufficient. They have their own low velocity power turbine, micro refinery, sewage treatment, doctor and a hospital. Best of all some very nice people. I served in the military with one of their members. A month or two in the sun plus the sunsets are great there. They could make it in a day drive. Its just over the line into Arizona from Vegas. Hope its helpful.

By M. Randolph Kruger (not verified) on 02 Oct 2006 #permalink

Thanks Randy! I will talk to them about it well into the night!! Oh, one thing about the card and the mail. Perhaps now is too early to hand them out (and it would take a while to get them all printed up etc anyway, so "now" is a relative term.) But waiting too long, like until WHO declares a pandemic, means that by the time they get the cards they are going to be gathering in supermarkets and WalMarts to get their supplies and potentially catching/spreading the flu. The main idea here is early and relatively complete isolation. so whoever you talk to, please point that out. It will cost no more than the cost of printing and postage to get them out well ahead of time, as they cannot be used until the govt activates them. If the people lose them, tough shit. Darwin was just proven right again. Got to run, got a plane to catch. aloha

By mary in hawaii (not verified) on 02 Oct 2006 #permalink