[Ip-health] Declan Butler in Nature on avian flu, and hoarding of data

[James Love]

Declan Butler has written a blog that discusses the failures of the
global response to avian flu in Indonesia, including the issue of the
failures to share (hoarding) data, and issue also discussed at the
WHA last week.  He attributes the hoarding to desire to be first to
publish.  Others have pointed to incentives to obtain IPR.  Jamie

* "What caused the suspected human-to-human transmission at Kubu
Sembelang is still a mystery. Nature has learned that the cases
differed from past Indonesia cases, in that they had much higher
viral loads in the throat and nose. Human-to-human transmission is
more likely through droplets coughed from the nose and throat than
from infections further down the respiratory tract.

* Mutations in cases in Turkey earlier this year showed a
substitution of glutamic acid with lycine at position 627 in the PB2
component of the polymerase gene. The mutation is thought to allow
the virus to survive in the cooler nasal regions. This mutation has
not been publicly reported in Indonesia previously, but Nature has
learned that it occurred in at least one case in August 2005."

* So apparently, noone is opposed to depositing the sequences in
Genbank immediately, but noone is taking the decision to do so. In
the Nature editorial, "Dreams of flu data" we argued: "Genetic data
are also lacking. When samples are sequenced, the results are usually
either restricted by governments or kept private to an old-boy
network of researchers linked to the WHO, the US Centers for Disease
Control and Prevention, and the FAO. This is a far cry from the Human
Genome Project, in which all the data were placed in the public
domain 24 hours after sequencing. Many scientists and organizations
are also hoarding sequence data, often for years, so they can be the
first to publish in academic journals. With the world facing a
possible pandemic, such practices are wholly unacceptable. Nature and
its associated journals are not alone in supporting the rapid prior
exposure of data when there are acute public-health necessities. "

* Three cheers, then, to Ilaria Capua of the Tri-Veneto Region
Experimental Animal Health Care Institute in Italy, who last month
threw down the gauntlet to her colleagues by refusing to put her
latest data on Nigeria and Italy in these private networks. Instead
she uploaded them to GenBank and called on her colleagues worldwide
to do likewise. Only in this way can researchers establish and track
the global pattern of the evolution of the bird-flu virus."

* Is it perhaps time for the Human Genome Project's "Bermuda
Agreement" on sequence deposition to be applied to all H5N1 sequences?


http://declanbutler.info/blog/?p=3D41

Declan Butler, reporter

Breaking the silence: "If this was a test to see whether Indonesia
could contain a virus, they failed miserably"

Published May 31st, 2006 in avian influenza.

The latter quote is from a front-page article I've published in
Nature tonight on what the experience of the large human cluster of
avian flu cases in Indonesia says about the realities of attempting
to slow the spread of, much less extinguishing at source, an emerging
pandemic in the context of a developing country, with poor health
infrastructure.


Plans by the World Health Organization (WHO) to try to slow or
contain a pandemic show that to have any hope of success these would
require rapid and decisive action within at most a three-week window
from the emergence of a pandemic virus. But the handling of the
cluster in Indonesia, as described in the article, is one of delays
and confusion. Brief recap; this involved 8 members of an extended
family in Kubu Sembelang, 7 of whom died, a patient fatality rate
seen nowhere else.

     [snip]


The initial quote came from Andrew Jeremijenko, who until March was
head of influenza surveillance at the US Naval Medical Research Unit
2 in Jakarta (NAMRU-2), and I'd like to thank him for having the
courage to speak out in my article.

Andrew, who spent last weekend treating wounded at the scene of the
Indonesian earthquake =97 he was also involved in the tsunami response
(see article here) =97 explained his reasons to me in an email: "I
think it is our duty to point out that containment has serious
limitations, and in an unusual event like this people need to be more
aggressive then usual. Political deference though acceptable in some
circumstances in others is not. I think this is important information
to get out there."

Working at NAMRU-2, Andrew witnessed the enormous gap between the
official rhetoric and the reality on the ground. Take the recent
declaration by Michael Leavitt, US Secretary of Health and Human
Services' statement to the World Health Assembly: "In closing, I ask
this Assembly today to pledge with me to abide by four principles of
pandemic preparedness:

* Transparency,
* Rapid reporting,
* Data sharing and,
* Scientific cooperation.

In reality of course, for many political and cultural reasons =97
including those of the scientific community itself =97 although some
progress is being made, lip service is often paid to these on the
ground, and that includes the US's own CDC =97 see Flu researchers slam
US agency for hoarding data. The problem, as we pointed out over a
year ago in Nature =97 see "On a wing and a prayer" =97 is this:

"Each human case that occurs in Asia is potentially a global threat.
The international virology community needs to be permanently there,
on the ground. We need to diagnose cases swiftly, and treat the
patients and all their contacts immediately with antiviral drugs to
try to kill the pandemic at source.

To understand the genetics, and link this to the epidemiology and
pathology of the virus, we need immediate sharing of all virus
samples and data. None of this is happening adequately. National
governments' performance is half-hearted, incomplete and far too
slow. International organizations are working with their hands tied
behind their backs, for bureaucratic and diplomatic reasons. In
short, the level of current efforts is not commensurate with the
threat we face."

That remains the elephant in the room. The WHO, like FAO and OIE,
answers to its member states =97 not the other way round, as many seem
to think =97 and therefore it is almost taboo for its officials to
criticize the actions of a member state, if they want to enjoy any
cooperation on the ground. They deserve to have their hands
strengthened, as noted in the recent Nature editorial, Dreams of flu
data.

"Not before time, the WHO will have broader powers in 2007, when
international health regulations, agreed by its members in May last
year, come into force. These impose obligations on states to respond
to any infectious disease of international concern. Cat-and-mouse
games will no doubt continue, but the WHO will at least have a
=91health policing' role, something that it currently lacks."

But with the exception of a few reporters, notably Helen Branswell at
Canadian Press, Maggie Fox at Reuters, and Nick Zamiska at the Wall
Street Journal, many journalists simply regurgitate the parsimonious
information from the PR departments of such agencies as if it were
gospel.

The critical tone of my article tonight, should in no way be
interpreted as disparaging of the valiant efforts of the many
committed staff and doctors in Indonesia and within the WHO battling
the problem on the ground. But we also must be aware, as journalists,
and citizens, that politics complicated matters.

And last, let's touch on the interesting question of sharing sequence
data =97 see again Dreams of flu data. The sequences of virus from the
victims of the Indonesia cluster have not been made public. Why not?
In the article, there is much buck passing among the three actors
involved.

1."Malik Peiris, a virologist, doing a great honest job at the
University of Hong Kong who sequenced the virus, declined to comment
on any mutations, saying that making sequences public is not his
call. "Our job as a WHO reference lab is to report back to the
originating country and the WHO," he says."

2."The WHO also declined to give any details. "We will leave that to
the government of Indonesia, the owner of the data," says Bjorge."

3. In an email received from the Indonesian government after my
deadline, it states with respect to making data public: "We are fully
aware of the threat of the next influenza pandemic. And Indonesia is
fully supporting whatever measures are considered necessary to
prevent, control and contain a potential pandemic. ;"

So apparently, noone is opposed to depositing the sequences in
Genbank immediately, but noone is taking the decision to do so. In
the Nature editorial, "Dreams of flu data" we argued: "Genetic data
are also lacking. When samples are sequenced, the results are usually
either restricted by governments or kept private to an old-boy
network of researchers linked to the WHO, the US Centers for Disease
Control and Prevention, and the FAO. This is a far cry from the Human
Genome Project, in which all the data were placed in the public
domain 24 hours after sequencing. Many scientists and organizations
are also hoarding sequence data, often for years, so they can be the
first to publish in academic journals. With the world facing a
possible pandemic, such practices are wholly unacceptable. Nature and
its associated journals are not alone in supporting the rapid prior
exposure of data when there are acute public-health necessities. "

Three cheers, then, to Ilaria Capua of the Tri-Veneto Region
Experimental Animal Health Care Institute in Italy, who last month
threw down the gauntlet to her colleagues by refusing to put her
latest data on Nigeria and Italy in these private networks. Instead
she uploaded them to GenBank and called on her colleagues worldwide
to do likewise. Only in this way can researchers establish and track
the global pattern of the evolution of the bird-flu virus."

Is it perhaps time for the Human Genome Project's "Bermuda Agreement"
on sequence deposition to be applied to all H5N1 sequences?

Below are a few excerpts from my article tonight.

"The WHO made the outbreak public on 18May. Health officials =97 and
stock markets =97 worldwide trembled five days later when the WHO
budged from its previous standard line that "the most plausible
source" of the cluster was infected poultry, and acknowledged for the
first time since the emergence of H5N1 that an extended chain of
human transmission was the most likely explanation.

Steven Bjorge, a WHO official in Jakarta, disputes the allegation of
unnecessary delays and bungling, arguing that the WHO and the
Indonesian government reacted promptly. "The team was in the field
early, and the Indonesians are doing a good job," he says. The
abscondments from hospital were "an unusual experience", he adds."

And some discussion of possible explanations for the cluster:

"What caused the suspected human-to-human transmission at Kubu
Sembelang is still a mystery. Nature has learned that the cases
differed from past Indonesia cases, in that they had much higher
viral loads in the throat and nose. Human-to-human transmission is
more likely through droplets coughed from the nose and throat than
from infections further down the respiratory tract.

Mutations in cases in Turkey earlier this year showed a substitution
of glutamic acid with lycine at position 627 in the PB2 component of
the polymerase gene. The mutation is thought to allow the virus to
survive in the cooler nasal regions. This mutation has not been
publicly reported in Indonesia previously, but Nature has learned
that it occurred in at least one case in August 2005."
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