[e-med] Quelles voix pour les Maladies Tropicales Négligées

["Pascal Millet" <pascal.millet@u-bordeaux2.fr>]

[Merci à Pascal Millet pour la traduction.CB]

Quelles voix pour les Maladies Tropicales Négligées
Traduction adaptée de l'article paru dans The Guardian (14 mai 2008)
http://blogs.guardian.co.uk/science/2008/05/neglected_diseases.html 
 
Une étude réalisée par des chercheurs de l?Université Victor Segalen
Bordeaux2 et publiée dans la revue en ligne PLoS Neglected Diseases
[http://www.plosntds.org/doi/pntd.0000234] a étudié l?importance de la
médiatisation de 3 maladies négligées : la trypanosomiase, la leishmaniose,
et la maladie de Chagas, et démontre un manque d?intérêt de la part des
médias. L?étude a répertorié et analysé les articles de la presse parus
entre janvier 2003 et juin 2007. Seulement 113 articles ont été publiés par
11 média principaux : les 4 premiers sont la BBC, le Financial Times,
l?Agence France Presse, et le Guardian.  Pourquoi si peu d?articles et si
peu d?intérêt ? Les auteurs (Mangai Balasegaram et col.), ont interrogés les
journalistes, qui ont reconnus ne pas s?intéresser suffisamment à ces
maladies, mais que les informations dont ils disposaient n?étaient pas
novatrices pour intéresser suffisamment le public. La publication met en
évidence le cercle vicieux causé par le fait que le travail des journalistes
est de transmettre les nouvelles informations, mais pas de les inventer.
Balasegaram et col. Admettent qu?il n?est pas facile pour les journalistes
d?écrire sur des maladies pour lesquelles ils disposent d?informations
limitées en terme de données chiffrées sur leurs incidences et leurs
conséquences. Le problème se reporte sur les agences internationales
chargées des actions de santé internationale telles que l?OMS ou la
Fondation Bill Gates,  qui doivent communiquer de manière plus active vers
les média afin de leur donner les éléments permettant de sensibiliser en
permanence les lecteurs et auditeurs. Enfin, le fait que le Financial Times
soit le 2eme média a publier sur les maladies négligées démontre bien
l'importance du lien existant entre les maladies négligées et le milieu
économique. 
Pascal MILLET 

***************

Let's hear it for neglected tropical diseases
		Sarah Boseley


A newly published paper reports that these diseases, which
affect one in six people globally, are neglected by everybody - by the
pharmaceutical industry, by mainstream global health efforts and by the
media
		
		May 14, 2008 12:38 PM 
		
http://blogs.guardian.co.uk/science/2008/05/neglected_diseases.html
		
There is a gripping story to be told about sleeping
sickness, a parasitic disease spread by the tsetse fly which threatens 60
million people in 36 countries of sub-Saharan <?xml:namespace prefix = st1
ns = "urn:schemas-microsoft-com:office:smarttags" />Africa. It's a powerful
newspaper yarn whichever way you tell it. It says as much about the vested
interests of big business as it does about suffering humanity. 
		
Here it is. Since 1949, the only effective treatment for
sleeping sickness, or trypanosomiasis
<http://www.who.int/topics/trypanosomiasis_african/en/> , was melarsoprol -
a drug that contains arsenic. Doctors hate it. So do the patients. It is
caustic, it burns, causing extreme pain, and it kills up to one in 10 of
those being treated.
		
Then a small miracle appears to happen. In the 1990s, a drug
called eflornithine <http://en.wikipedia.org/wiki/Eflornithine>  is found to
be very effective against sleeping sickness. It is so good at pulling people
out of their coma it is nicknamed the "resurrection drug". But it is way too
expensive for the desperately poor people who get the disease. The drug
company holding the patent stops making it because it isn't profitable -
except in rich European and North American countries, where it is a useful
ingredient in hair removal creams. 
		
Fortunately, people who do care about the treatment of poor
people in developing countries - the volunteer doctors of Médecins sans
Frontières <http://www.msf.org/>  and the World Health Organisation -
successfully campaign to get production started again.
		
It's a good story, and I've used it twice: once in October
2001 and again in December 2003. But I haven't written any more about
sleeping sickness because, sadly, as far as I'm aware there is nothing new
to say.
		
Indeed, a study published online by the journal PLoS
Neglected Tropical Diseases <http://www.plosntds.org/doi/pntd.0000234>
[http://www.plosntds.org/doi/pntd.0000234] takes a close look at the media
coverage of diseases like sleeping sickness and finds that we journalists
overlook them. It reveals that between January 2003 and June 2007, only 113
articles were published by 11 leading media outlets, including the Guardian.
We came fourth, with 15 pieces, after the BBC with 20, the Financial Times,
and Agence France Presse. The Economist and Daily Telegraph managed three
pieces, and CNN trailed everybody with just one.
		
Why are we so neglectful? The authors, Mangai Balasegaram
and colleagues, asked a few journalists this question (they didn't ask me)
and were told that they agreed there should be more coverage, but that the
stories had to be newsworthy. They also cited a drive towards the more
parochial concerns of their domestic audience and competing health
interests, but the prime reason was absence of any news development.
		
Which is where sleeping sickness and the resurrection drug
come in. We know there are some appalling diseases that kill and maim poor
people who deserve better in tropical countries. The three diseases the PLoS
paper focuses on are sleeping sickness, Chagas (which fares very badly with
only one story specifically about the disease) and leishmaniasis. But there
is a limit to the number of times we can say that. We can and will, however,
write a gripping tale when we hear about one - and the struggle for
eflornithine is just that.
		
The PLoS paper rightly points out that these diseases, which
affect one in six people globally, are neglected by everybody. They "are a
low priority for the pharmaceutical industry, lacking safe and effective
treatments; are overlooked by mainstream global health efforts, receiving
little funding; and are ignored by the media, rarely making headlines." 
		
This is a vicious circle. Newspapers reflect the news, they
do not often make it. We exist to tell you what other people are doing, not
what we're doing ourselves. Balasegaram and colleagues accept that it is
challenging for journalists to report "on relatively unknown diseases with
limited information". They rightly conclude that those who know should speak
louder, and that includes UN agencies and grant-givers such as the Bill and
Melinda Gates Foundation. In my own limited experience, the only people who
have ever contacted me about these issues have been Médecins sans Frontières
and DNDi (the public/private Drugs for Neglected Diseases Initiative that it
helped set up) <http://www.dndi.org/> .
		
So, yes - the media should do more. I think we would if
anybody came to us with the germ of a good story. With so much else
happening in health, we don't have time to hunt without hints. But the door
is at the very least ajar.
		
Hindustan Times:
		
	
http://www.hindustantimes.com/StoryPage/StoryPage.aspx?id=113da45c-f7f4-4fce
-b23a-3bfc45cf66ef&MatchID1=36&TeamID1=7&TeamID2=2&MatchType1=5&SeriesID1=1&
PrimaryID=36&Headline=West+ignores+tropical+diseases