Outbreaks and Poor
Communication: Could We Have Done Better?
Dr David Quek
dquek@pc.jaring.my
"The public is poorly served by the
coverage of medical science in the general press. Scientists
and physicians blame the press, claiming that journalists are
careless in their reporting, subject to competitive
pressures, and ignorant of the scientific process.
Journalists accuse the medical community of limiting access
to information and erecting barriers to the public
dissemination of medical research."
Drs Miriam Shuchman and Michael
Wilkes.Medical Scientists and Health News Reporting: A Case
of Miscommunication. Annals Intern Med (15 June 1997).
Almost exactly one year ago, a deadly viral
infection claimed the lives of some 47 odd children in
Malaysia. Amidst public clamour and finger-pointing, the
disease was loosely identified as a "Coxsackie
myocarditis", but this left the public with a lot of
unanswered questions, and worse still left most physicians
almost totally in the dark, regarding the actual cause and
clinical course of this epidemic, which had external features
similar to Hand, Foot and Mouth Disease (HFMD).
To make matters worse, diverse reports and
isolation of various viral agents such as the enterovirus
EV71, adenovirus, and coxsackie virus, further confuse the
already hazy situation. Furthermore, detailed reports by some
concerned physicians who have had similar experiences
managing arguably the same serious condition, gave a somewhat
different scenario from that of the official one.
From our interactive Outbreak news
reporting exactly one year ago, the Berita MMA (July 1997),
carried versions which implied that the most likely culprit
agent was the enterovirus EV71, and that the clinically fatal
syndrome was more suggestive of an acute fulminant brain-stem
encephalomyelitis, associated with peripheral features of
HFMD. Unfortunately, despite at least one
"outbreak" seminar held by the Sarawak Health
Department and Ministry of Health on the 22 July 1997, no
official report has emerged, and we are still somewhat in the
dark as to the actual status of the last epidemic.
This is sad, because, a very similar
outbreak has now afflicted Taiwan, killing at least 50 young
children, and is causing fear and anxiety on a smaller scale
in Hongkong. The early scenario in Taiwan was remarkably
reminiscent of our own outbreak where recriminations and
confusion reigned, but hapless infants and young children
continued to die too quickly for the authorities to
comprehend the severity of this hitherto unknown infection.
Worse, they did not have any authoritative
or comparative assistance to help them come to grips with
their epidemic. Frantic questions were bandied about
regarding its uncanny similarity to the Malaysian outbreak,
only to be stonewalled by lackadaisical officialdom and
tongue-tied bureaucracy. Happily though, through the internet
and especially the PROMED site, some of our more
independent-minded local experts have been very helpful and
forthcoming in providing some much needed feedback to soften
the panicky backlash from the Taiwanese media and public.
Misconceptions were quickly dispelled and useful suggestions
on how to contain the outbreak helped calm down the
situation, but not before, a heavy toll was exacted–some
50 young children had died.
From this sad affair, one wonders if better
sharing of information, and a more prompt appraisal with
better, more definitive and comprehensive reporting from our
end, could have lessened the impact of this frightening
epidemic. Could more children have been saved? Could we have
shortened the duration of the outbreak? Might we have been
the initiators or pioneers of earlier preventive measures?
Could we not have been more responsible as global citizens,
so that many more lives elsewhere in the world, might have
been saved?
Once again, over the past few weeks, the
editor of the Berita MMA has been assailed with many queries
by doctors and lay persons alike with access to the internet.
Many are truly concerned that up to now, we still remained
mired in uncertainty regarding our own outbreak.
Perhaps, our Health Ministry should have
been more forthcoming in providing an updated, accurate and
comprehensive report on our now past outbreak, so that we can
all learn from it more thoroughly. Although the Health
Ministry has done commendably well, in disseminating useful
knowledge about hand-foot-and-mouth disease (HFMD), and have
quickly highlighted and enforced several relevant preventive
measures, the final report and assessment has not been made
known, to date. Thus, many well-meaning physicians are left
ambiguously unsettled as to the actual situation.
This has therefore, fanned some severe
criticisms from epidemiologists and clinicians, elsewhere and
within, who felt (justifiably) that we should have been
better informed, and that governmental interference should be
kept at its minimum to let experts carry out their duties and
expound their knowledge without fear or favour. The spectre
of the Official Secrets Act should not be suspended like a
Damocles' sword over our scientists, an unuttered but
insinuated threat to silence them from speaking their minds,
without "official" clearance or permission.
Should scientific and medical information
be subjected to such antiquated rules which belie a different
age? It is clearly anachronistic in this age of
near-instantaneous knowledge and multifarious information of
the world wide web, to try and curb or even censor, useful
and beneficial information. With the ever widening
ramifications and interconnectedness of the internet and
cyberspace, one can literally access whatever information or
misinformation that one wishes to.
However, I wish to reiterate here, that
although the internet is one huge global complexity, its
information largesse is unfiltered and oftentimes
incomprehensibly contradictory and confusing. Clearly, we
must have authoritative masters who can provide the best and
untainted answers, dispassionately.
It is heartening to know that we do have
certain centres of excellence for infectious disease
surveillance from the USA, i.e. the University of Nebraska
Department of Virus Research and the Centre for Disease
Control, and recently the Japanese National Institute of
Infectious Diseases (NIID). They have been particularly
helpful in their unbiased appraisal and recommendations. The
Hongkong Health Authority has recently, also been very quick
to react, and is to be lauded for its efforts in trying to
stem the public panic which threatens to engulf the special
economic territory. Clear and rapid dissemination of collated
information (even if not irrefutably substantiated) surely
helps in containing any alarming situation.
Any illness which is fulminant and rapidly
fatal, is a trying and frustrating experience for many health
workers. It is with collaboration and sharing of information
from every possible and reliable sources, that helps lighten
the burden of having to go it alone, and perhaps even help
facilitate scientists to more rapidly identify the causative
agent, and determine the clinical course more expediently.
The pursuit of such intricate research will
be helped that much more, if knowledge is free-flowing and
spontaneous, without any meddling or constraints from any
quarters. Therefore, we should not allow illiberal,
narrow-minded and incongruous rules from stifling the
spontaneity of research and scholarship, lest we intend to
kill off any innovativeness and inventiveness of scientists,
everywhere. If we allow ourselves to be smothered by
bureaucratic censorship, however well-meaning, we will all be
the poorer for it.
Clinical or basic research is already at a
comparably low level in Malaysia. It should therefore be
encouraged wholeheartedly, so that more and more scientists
can be allowed to explore newer and more innovative studies.
One important area of clinical research is that involving
infectious diseases which developing nations are particularly
susceptible.
Clearly, from a global medical perspective,
we are becoming increasingly beset with newly emerging
infections as well as changing infection patterns–from
older microbes which have mutated into agents with increased
virulence or antimicrobial resistance. Different mutant
strains of hitherto mild and benign viruses have now been
increasingly identified as being particular virulent and are
causing different clinical manifestations and outcomes. The
enterovirus 71 is one such agent which has been implicated as
the culprit in several outbreaks in the past 2 to 3 decades.
In view of this, it is heartening to note
that in Japan, through its NIID (National Institute of
Infectious Disease), there has been an ongoing surveillance
of various microbes including common viruses such as the
Enterovirus. Using nucleotide sequencing techniques, their
scientists have been able to determine changing patterns and
behaviour of certain viral genotypes, and even further
phenotyping them into their particular strains.
Molecular epidemiological comparative
analysis can help in deciphering the differing pathogenicity
and viral characteristics of certain strains, and therefore
help monitor outbreaks with better confidence. Clearly
cross-border assistance can help isolate culprit strains very
much more rapidly, and perhaps allow earlier identification.
This can therefore enable preventive measures to be
instituted early, or even standardize therapeutic measures to
help save lives.
In view of the endemicity of such common
viruses in the region, it behooves the Malaysian scientific
community to take cognizance of this circumstance, and
perhaps emulate the USA and Japan in setting up such
infectious disease surveillance units, so that we can track
our own viral strains more closely.
We already have several viral research
laboratories such as those at the IMR, UH, USM and now
Unimas. Perhaps we can expand these facilities so as to
foster closer collaboration and exchange of information and
ideas, and help unify a common stance against this and future
outbreaks. Participating hospitals and the Ministry of Health
should render their fullest support, and allow these centres
to attain their true potential. Muzzling exchange or
dissemination of information, because of fear of conflicting
sensitivities should be made a thing of the past.
18 July 98
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