H5N1 clinical data needed. ASAP.

One of the most valuable things WHO has to offer in an influenza pandemic is information. Unfortunately, this hasn't been their strong suit. They have been relatively slow in disseminating epidemiological information, mainly because they have not been able to get good cooperation from the member states. Even when they can release the information, however, unaccountably they don't. Their risk communication skills are, shall we say, vestigial. The sequence release issue has become a crisis of confidence in WHO veracity. Yes, they have problems with member states (see here, here, here, here and here), but one can't help but feel they haven't pushed hard enough or been aggressive enough in many instances.

There is more than outbreak and sequence information involved. There is the matter of clinical best practices, which WHO should be in the best position to collect, organize and disseminate. But they have had the same lack of success as with outbreak and sequence information. Three years into this smoldering proto-epidemic, we still don't have a full picture of incubation period, interinfection interval (serial time), presenting symptoms, dosing and treatment efficacy for antivirals, natural history of the disease and much else.

"There is a paucity of this information at the WHO which we are working to correct," said Maria Cheng, a spokeswoman for the WHO. "The information that we have is probably best described as fragmentary."

[snip]

The WHO is drafting a questionnaire to gather more information from frontline health workers, but still needs approval from the officials and countries concerned.

Ms Cheng said a study funded by the US National Institutes of Health would begin this autumn in just three of the 10 countries affected by bird flu, and could take two years to complete. (24x7 update)

In the SARS episode we now know that when it looked like WHO wasn't doing anything they were working frantically behind the scenes to bring China around. I expect there are some similar efforts now. But whatever they are doing isn't working well or fast enough. It's been 3 years. Three years. Not the 3 weeks that we are talking about with SARS. It isn't always easy to get hospitals and clinicians to cooperate with data. But it isn't that hard, either. Doctors respond better than most to cogent arguments about the need for this information. It's in their interest.

It's not just WHO. Where's CDC? And NIH is taking its own sweet time as well. Waiting until autumn to do a study betrays a shocking lack urgency. The wheels of NIH normally turn slowly, but they can be speeded up when needed.

It's needed.

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It is all a bit of a mystery.

I did appreciate the series of posts on WHO.

As a non specialist, only the grander scope beckons.

1) An informed person, over lunch, spontaneously said to me, after I simply said, Mr. D. what about avian flu..

:: well whaddaya expect, its a sensitive issue, bird flu, who knows what is in the data, what is going on, everyone is shit scared, your economy is down the toilet at the whiff of anything newsworthy, fingers pointed, canny and close mouthed is better. ::

Err. OK.

2) UN orgs have been struggling; some say gutted by the US .. but their weakening has suited many, as it permits them to participate in world affairs, but at the same time push the interests of their nation-state, to the satisfaction of those at home.

The fact that the WHO (or other) is dumped on permits nations to reduce their contributions or give through the back door (72% of funding of WHO, I have heard, is given by interested parties as they are called, outside the regular arrangements) thereby by-passing the cooperative old-style arrangements. No clue as to how that is managed...but they are firing translators...

And then there is a weird sister organisation - the Global Funds - set up by Gro Brudtland, which has taken over int l prevention and treatment of Aids, malaria and tuberculosis. I am guessing, this was done to by-pass WHO statutes to encourage donors such as Bill Gates, who, one supposes, would never give to the WHO.

..What I see dimly is the death of the old arrangements in favor of:

a) in-groupy polarization, tempting to all in the short term;

b) a move towards *private* institutions, supposedly efficient and *accountable* to donors;

c) globalisation which is polarised on issues, particular problems rather than resting on or taking off from group or national decisions, or concerted, world, cooperative stances...

The result is an unstable, disconcerting, fluctuating political environment which must be very hard to navigate.

http://www.theglobalfund.org/en/

PS. Ramble from a non-expert who has lost some punctuation marks.

Revere: Did you happen to see the editorial on WHO in today's Washington Post? (What gives me the idea that you-all are located in the DC area? Well, I work in Falls Church, known now as Home of Fluwiki, so that's the rag I read.) The piece, entitled "WHO Knows Better," concludes:
1) that we need to "help" WHO (read: give money) and
2) that "developed" nations need to coordinate and target work on vaccine production.

OK, but no mention of data withholding or lack of sequence release by WHO. The editor instead blames understaffing at WHO and "bad" medical facilities in rural Indonesia.

Could you find the time to try to straighten out their thought process with a letter to the editor? And/or perhaps Dr. Niman could explain to them the reasons for immediate release of sequences. Their subtitle is: "Neither the world, nor the World Health Organization, is prepared for a real pandemic," but they certainly don't go very far in explaining why this is so.

Ricardo,

I'm located in Falls Church, the rest of the mods are spread out across North America. Flu Wiki is located on the Internet.

Ricardo: Saw it and clipped it and then had to go off and be a normal person for awhile. Just got back, but it's also my anniversary, so it will likely wait.

Happy anniversary!

It's going to take me a while to get used to this new space...

Funny isn't it? Kinda like moving into a new apartment...

....maybe some plants might help?

By tardigrade (not verified) on 10 Jun 2006 #permalink

You say of WHO "Their risk communication skills are,shall we say,vestigal"
I believe that this comment is altogether too elegant and polite. Adherence to rampant "political correctness" has robbed us all of realistic,practical debate and honesty.We now cower behind the possibility of telling the unvarnished truth in case we offend somebody.Err,China,Indonesia,Iran ...the list goes on.We have all recently seen calumitous results from ineptitude in emergencies.Why cannot we learn from this?

Taking a cue from Mara regarding the 'unvarnished truth' our own pandemic preparedness is not reality-based. The more experts I interview the more unnerving it is. And the CDC, HHS etc. all keep laying preparedness off, really, on states, counties and localities..witness Julie Gerberding's comments in Boston last Thursday as well as Mike Leavitt's consistent mantra. Are they positioning themselves for a Senate hearing a few years from now on why so many people died, so they can say, "hey, we told them to prepare!"

James Unland, Executive Editor, Health Business And Policy

Why does membership in the world (mostly) free trade system come with no responsibilities? Shouldn't it require membership in the international criminal court and public health openness?

If ya wanna play, ya gotta pay.

By Ground Zero Homeboy (not verified) on 11 Jun 2006 #permalink