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Letter in response to Joep M. A. Lange, 20 July 2005

Posted by plosmedicine on 30 Mar 2009 at 23:45 GMT

Author: Melissa Ditmore
Position: Editor
Institution: Research for Sex Work
Submitted Date: August 24, 2005
Published Date: August 26, 2005
This comment was originally posted as a “Reader Response” on the publication date indicated above. All Reader Responses are now available as comments.

To the editors:
Joep M. A. Lange ("HIV/AIDS Prevention - Why were the HIV prevention trials in commercial sex workers abandoned?" 20 July 2005) neglected the complaints of the sex workers in the trials - a lack of attention to their long term health care, an appalling lack of answers to their questions about side effects, and in some places, inadequate translation of the trial materials, and that past experience has not delivered any new drugs to sex workers in the developing world once a trial is complete. Cambodian sex workers were offended by the assertion that they should be the bodies upon whom tests are conducted for the benefit of the rest of the world, without guarantees of health care for side effects and infections that occur during a trial and without even answers to their questions about the trial. Most people in the west would have been offended if they'd been asked to do the same. The expectation that marginalized populations will accept such ungracious treatment is patently offensive.
Sex workers would like to see research continue and would like even more to see sex workers have access to effective treatment and prevention. Trial participants in the West have been motivated to push for faster development of drugs by the need for treatment. Sex workers have met with the organizers and backers of trials - this is enormously cooperative! Some meetings have been good and others have been baldfaced tokenism, even without translation. Nothing says "we don't care what you have to say" louder than a lack of translation for someone flown thousands of miles to sit at a meeting for two days.
When sex workers and other marginalized people are genuine participants with input at all stages of research, sex workers will be eager research participants. There is a good example of this in Research for Sex Work 8, available from http://www.researchforsex.... There is an update on the tenofovir trials but the lead article is titled "Cambodian sex workers conduct their own research." These sex workers were invited to choose a topic and design research that would be useful for them. They did so because they had input into the research at every level. Drug researchers should take note.

Melissa Ditmore
Editor, Research for Sex Work

Competing interests declared: I was an inaugural board member of the Network of Sex Work Projects, and I am editor of Research for Sex Work which is published by the NSWP. I have encouraged participation and recommended specific people for meetings with Gates and UNAIDS but I have not been employed by these agencies. I have advocated for participatory approaches to research, as in my note to PloS.