Part 1: Cluster information is being blocked
You can find information on H5N1 clusters at FluWiki?, but you won’t find it at the WHO avian influenza page. Now, that’s odd. Because, you see, clusters are the number one sign that H5N1 is in the process of becoming a pandemic strain. So, why doesn’t the WHO track these? Or does it track them but lock the information away in a secret cluster database, a la their secret sequence database. Most of the documented clusters are relatively small, which would be consistent with phase 4, according to the WHO global influenza preparedness plan. However, there were media reports of much larger clusters in the Turkey outbreak, which occurred in January 2006. Prior to this outbreak, the WHO usually provided symptom onset dates and enough identifying information, age and gender, that it was possible to figure out the relationships between the infected individuals. Strangely, this information was not provided for most of the Turkish cases. Here is the last update from the WHO regarding the Turkish cases. Note the lack of basic epidemiological data, symptom onsets, relationships between patients, etc. Also, note the date - January 30. Um, epidemiological guys at the WHO, anything you’d like to share with us about your investigation? No? Too bad.
Part 2: Blocking cluster data is dangerous to our health
Why is acknowledging H5N1 clusters important?
Hiding this information from the world is not acceptable. The WHO should release the cluster information from Turkey now. The lives of Azeri families are at risk.
bravo!
WHO is already under considerable pressure about the sequences.
Turning up the heat, at least for reasonable explanations, is a good idea.
Thanks Montanan and DemFromCT.
From a practical point of view (politics, if you will) sequence data has a much more potent constituency than cluster data, which is less than seroprevalence data.
Everyone wants sequence data. A lot of people want seroprevalence data. We want cluster data, but without further generational spread beyond the clusters, the urgency is a bit less. That’s why I think the end point might be more explanation and more transparency. The clusters may or may not show anything, in other words, but sequencing and seroprevalence most assuredly will. But more transparency is a universal plus.
My opinion.
What’s the constituency for cluster information? How about families in Azerbaijan who should be told that family gatherings like funerals for H5N1 victims may get the participants killed? We hear a great deal about risk communication. Here’s my radical idea: Proper risk communication involves telling people what the risks are! If you don’t tell them H5N1 is transmitted by close contact with victims, and possibly relatives of victims who don’t know they are infected, then people will die unnecessarily.
The wails of families in Azerbaijan who were not warned about large clusters will echo throughout central asia. What will it take for the Director-General to unblock the cluster information - the keening sobs of families in Geneva?
You’re preaching to the choir. I would respectfully submit that families in Azerbaijan are not the powerful lobby that world renowned labs and scientists and institutions denied access to sequences are. That’s what I meant by politics and practicalities. I’m not arguing about the need, and I’m glad you posted this. My expectations are that the primary pressure will be on the sequences, but once the information floodgates open, and there’s a precedent for transparency, more to the good.
Talking about Dead Bodies: Risk Communication by Peter M. Sandman and Jody Lanard
Snowy,
Peter and Jody are friends of this site.
DemFromCT: I am preaching, but not to you. I know where you stand on this. My intended audience is in a land-locked country in Europe.
My point is that families may be a more potent constituency than some dull molecular biologists. Maybe the West will ignore the tragedy that has occurred in Turkey. Maybe the West will ignore the tragedy that is now unfolding in Azerbaijan. If so, they will find the tragedy in their homes, soon.
Well, ignore is a strong term. But anyway, let’s ask for and expect at a minimum a progress report, with more details to come.
Monotreme, I’ll add my small voice in support of your call, for what it’s worth. How about starting an online petition or something? I read Sandman last year and it made a lot of sense — give us the straight facts and stop freaking out about whether we’ll freak out. We’re far more likely to freak out if we get so much as a whiff of cover-up and we’ll never trust anything they say again!!
Name. Speak out more often. Your opinion is valued.
..another point is that our “lobby” for the straight facts is up against a far more powerful lobby — i.e. the business and economic interests who fear that the straight goods will disrupt markets and profits.
There is certainly a valid concern in that such disruption can and will hurt far more people in the short term. One can argue very convincingly that the long-term benefits of transparency will far outweigh that, if it’s clear that a pandemic is inevitable — which it’s not at this stage. It can also be argued that since the recent spread in birds, much of the world now accepts it as inevitable — sooner or later — and that more transparency will therefore no longer cause that much of a shock.
Name: Canada has representation at the WHO right now. So, I think the most effective thing would be to contact your goverment, especially your ministry of health. DemFromCT says phone calls are the most effective. Same would go for Flu Wikians from any country with a representative democracy. Call your representatives and tell them you want to know how dangerous this thing is and that the WHO is currently hiding what happened in Turkey. Tell them you want the WHO to release all information regarding clusters, especially the big ones in Turkey, and maybe now in Azerbaijan. It would be great if the UN representative from some country were to bring this up at the UN.
Monotreme. I have been doing just that for eight long years. The end result…’doublespeak’ and comments like…a pandemic will kill 50,000 people and we lose that many to smoking anyway.
The general public doesn’t have their heads in the sand but the regulators and those with power do….disconnect from the real world. Add Name’s comments on various lobbies and bingo, we’re where we’re at today.
Name and Tom DVM: I don’t doubt the power of economic interests, but if enough parents call their representatives and tell them that we value our children’s lives more than bobbleheads Made in China, maybe we’ll get some action.
You are right as always. I must say however, that after eight years of frustration, I really can’t be bothered. The regulatory agencies I have dealt with, are by every measure, full of ****.
Sorry, that should have been titled Monotreme.
Mono, our new PM & govt (who’d love to kill Kyoto, privatize health care and increase our military role in the Middle East) are no fans of transparency. The PM has just ordered all his ministers to refrain from making any public statement that’s not first approved by his office, something unprecedented in Canadian politics. Crawford Killian (of Crofsblog) wrote our new Health Minister weeks ago asking about plans for H5N1 and is still awaiting a reply. I don’t say this to sidetrack this very important topic with a tangent on Canadian politics, but I wouldn’t count on Canada to do anything that might threaten business as usual at this point — I’d see Leavitt or Bush as likelier candidates. We’ve heard absolutely nothing about H5N1 since our new government was elected two months ago.
Tom DVM, one phone call won’t do it. But a couple of thousand, on the same day, say, tomorrow, might have an impact. Don’t call the regulatory agencies, call your representative. DemFromCT says American politicians take phone calls seriously, especially if they get alot of them on the same subject. I assume the same would be true in other countries as well.
Lugon, how do we organize a mass phone call campaign to get the WHO to release the cluster information?
Name: Your politicians, like ours, want to get re-elected, they all do. I might be wrong, but I think a mass phone call campaign will get their attention. Let your representatives know that you are holding them responsible for getting the cluster information out of the WHO.
Monotreme. You get 1999 others and I will be 2,000.
Monotreme. I already stuck my neck out and they tried to cut it off.
Tom DVM: I have had a similar experience. I now wear a steel collar and go by a pseudonym ;-) There’s a reason some of us cynical.
I can’t help you in Canada, but Name’s got your back :-)
Monotreme said: Proper risk communication involves telling people what the risks are! I add: Proper risk communication involves -as the main purpose- telling people how big the risks are. While cluster data only indirectly contributes to estimating the risks, estimates from the experts directly and efficiently would do this. But instead of giving numbers, experts are hiding behind verbose unclear wordings or specific scientific descriptions which the normal people don’t understand. It is most apparant, that normal people consider the risk much lower than average experts. Is this wanted ? What we need even more than Cluster information and sequence data are honest probability estimates and expectation values given and discussed by experts. Refusing to give estimates (some (wrongly) would like to call this guesstimate) and avoiding a discussion of this is dangerous to the expert’s credibility perception and thus -in a situation like this- to the world’s health !
Monotreme. Right on! I will never give up and am ‘keeping my powder dry’ and waiting for an opportunity to finish them off.
Tom, our best bet in Canada might lie in convincing business that it’s in their best interest to have the public well informed and prepared. They’d have no trouble convincing Ottawa to act. I think any smart business leader would “get” Sandman’s message about the critical importance of transparency. We’ve got that analyst from BMO (Sherry someone) who’s been writing a fair bit on implications for business. And we’ve got a great asset in Helen Branswell. How can we enlist their help in convincing business that it’s time to get the broader public constructively engaged on this, as they are doing in the U.S.
I just read our new Health Minister’s bio, which reminded me that Tony Clement was Ontario’s Health Minister during the SARS crisis. So while he should totally *get* the health risks, he is undoubtedly also acutely aware of the economic toll that the SARS scare took on Toronto and Ontario and I’d imagine he will be a very tough nut to crack in terms of buying the value of transparency. We have our work cut out!
Name. In my honest opinion, Tony Clement, went way beyond the call of duty and did an excellent job during the SARS crisis. This is not a political statement as I have not voted for his party in an Ontario election ever. If you excuse the pun, he is probably the right man at the right place, but he’s standing on a **** heap.
Name. An effective regulatory authority in Canada? The British Columbia Centers for Disease Control….efficient and effective. Expand their model and we don’t have a problem.
Tom, I have a sibling who’s an MD out here in Vancouver and they finally had an internal discussion/briefing for frontline docs on local pandemic planning a couple weeks ago. They’re assuming a very low fatality rate and they are also reportedly planning to keep our schools open throughout a pandemic. I know the BC-CDC is said to have handled SARS very well but it all seems way too over-confident and it’s very worrying that they’re doing nothing to inform or engage the public. It’s all “Don’t worry your pretty little heads, leave it to the experts, we’ve got everything under control.”
Name. You’re a much needed voice of reason. Don’t go anywhere.
Name. I will use one measure in respect to Tony Clement’s abilities…and that is in the way he deals with the issue of seven ethical Health Canada scientists that were summarily fired for telling the truth, the whole truth and nothing but the truth.
a - Did you happen to catch Clement speaking to the Chicken Farmers on tv news yesterday? - great visual!! He was standing at a lectern with the word ‘chicken’ in big letters across the front!! Worth a thousand words!!!
b -Richard Schabas - noted naysayer - is now MOH in Quinte - he needs to be sent copies of Dr Niman’s recent posts!!
Old thread closed to speed Forum access
Check dates