E-DRUG: Access to Information from Indonesia
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It is now more than ten years since Suzana Murni encouraged me to work
with her to address the challenges of access to treatment for people
living with HIV/AIDS (PLHAs) in Indonesia. At that time, of course, access
to the antiretrovirals that we now take for granted was out of the
question. But we felt that at least those infected and affected by HIV
should have access to information. We felt sure that this would improve
quality of life through empowerment. In addition, we wanted to respond to
the myth that 'there is no treatment for AIDS' by providing information on
prophylaxis and treatment of opportunistic infections. At the same time,
we felt it essential to provide information on the new treatments becoming
available, to provide hope and to guide people in planning their personal
strategies.
Since few of our 'constituency' could speak any of the international
languages, this effort clearly involved a lot of translation. And since
none of the international journals or news agencies provided translations
into Indonesian, we were forced to do this for them. On occasion, we did
try to obtain approval to do so, but rarely received any response. Those
we did receive confirmed that we would be breaking copyright if we
disseminated translations without prior approval. Despite this, we went
ahead.
With the pressure upon Big Pharma to improve access to drugs for people in
the developing world in the late 90's, there was also a move towards
liberalization of access to information. Several journals, with the
British Medical Journal (BMJ) in the van, gained kudos by advocating for
free access, and (to a certain extent) 'putting their money where their
mouth was'. This spawned the HINARI project, which aimed to provide almost
unrestricted access to such information in the developing world. But while
this may have facilitated such access for academic institutions and
perhaps doctors, I have heard of no case in which it has assisted activist
organizations in the developing world; if there are such cases, I'd love
to hear of them. Even had it done so, it wouldn't have helped us, since
for no apparent reason, Indonesia is absent from the list of eligible
countries.
However, at that time at least some of the journals provided free access
to some of their articles. The BMJ (bless their hearts) also allowed
unrestricted access to browsers from the developing world after free
registration. Sadly, and without any announcement that I have been able to
find, the BMJ has now rescinded that policy, and is now relying on HINARI.
While one assumes they must be aware that HINARI does not list Indonesia,
they proposed this to me as a solution for access - like offering a
starving man a tin of sardines without an opener! They also noted that
access becomes free 12 months after publication. Wow! Talk about time-
expired!
At a time when it is finally becoming accepted that the community plays an
essential role in support of treatment for PLHAs, with particular emphasis
on the need to provide the most up-to-date information in support of
adherence, it seems that the medical information industry is taking a leaf
out of the Big Pharma book, seeing their most important role as supporting
the bottom line, rather than community health. I have always been
convinced that our efforts to liberalize access to drugs must be
complemented by similar efforts regarding information. After all, as
someone said, drugs are only a bottle of chemicals accompanied by
information.
By the way, the particular article that I was unsuccessfully trying to
access in the latest BMJ, and which drew my attention to the changed
policy, was "Impact of a medically supervised safer injection facility on
community drug use patterns". This is just the sort of article that is
essential reading for the activist community, but I'm doubtful how many
doctors will want to read it! A very curious decision!
Chris
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Chris W. Green (chrisg@rad.net.id)
AIDS Treatment Educator, Spiritia Foundation
Jakarta, Indonesia
Tel: +62 (21) 7279 7007 Fax: +62 (21) 726-9521