03/08/08

AIDS activists disown the loony fringe

Thinking back to press coverage of past AIDS conferences, I don’t hear “AIDS activist” and “Voice of Reason” echoing through the same sentence all that often. So I was particularly pleased to read In defence of rational AIDS activism, an exceedingly sensible piece from uber-activists Nathan Geffen and Gregg Gonsalves.

Geffen and Gonsalves take fellow activists to task for what they call “pharmanoia”, a phrase they borrow from another perennial voice of reason, Science reporter Jon Cohen. They single out ACT UP Paris for irrational attacks on researchers conducting potentially important drug and prevention technology trials. It is not in anyone’s interest to discourage scientists (even scientists who take the Big Pharma shilling) from developing and trying out new approaches to preventing HIV and caring for those infected. I speculated earlier that downward pressure on drug prices might have the same effect for some. Activists have an important role in keeping researchers as well as drug companies honest, as Geffen and Gonsalves point out in their article, published in the Journal of the Southern African HIV Clinicians Society:

“Scientific research is the reason that technology exists that renders HIV infection a chronic lifelong infection, as opposed to the death sentence it used to be. The significant investment into that research and the high quality with which most of it has been conducted is in large part due to the efforts of activism. As activists we should not allow that success story to be undone by irrational behaviour. The consequences will be deadly.”

Harassing researchers and pharmaceutical companies on the basis of unsubstantiated reports of amorphous wrongdoing will prove a disincentive even to those who are not motivated by profit. In the process, rational, well-informed activists get tarred with the brush of the loony fringe. That’s not good for anyone.

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This post was published on 03/08/08 in Science.

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3 comments

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  1. Comment by Jérôme Martin, 15/08/08, 10:10:

    I am Jérôme Martin, from Act Up-Paris.

    Please find below our answer to Gonsalves and Geffen :

    http://www.actuparis.org/article3482.html

    Please find here :

    http://www.actupparis.org/article3478.html

    the list of the texts that we published on every trial mentionned. Some of this texts are on our website for 10 years.

    Please find here :

    http://www.actupparis.org/IMG/pdf/ANRS_and_Orange_Farm_2_study.pdf

    a letter from the director of the French Research Agency, Jean-François Delfraissy to TAC and Gonsalves. He describes the partnership between the French organizations and his Agency on the Orange Farm trial. It shows how much Geffen and Gonsalves are wrong. They read this letter last fall and still repeat the same accusations, although they have the evidence that this is wrong. WHO IS IRRATIONAL ?

    I am really surprised that you post your comment on Geffen and Gonsalves’s article without trying to contact us, without quoting us so that your readers can make their own opinion. How rational is blaming publicly a group of People Living With HIV and Aids without any evidence for the accusation and without trying to contact them before ?

    Please now, read ALL OUR WORK and give your ENLIGHTENED opinion.

    I am volunteer in Act Up-Paris for 10 years and I don’t kno you. What do you know about Act Up-Paris ? We sit in the scientific council of the French Resarch Agency, we are included in the redaction of the French therapeutic recommandations, we meet twice a month the representatives of the pharma industry, we publish every two monthes a newsletter where we comment the ongoing clinical trials, this letter is read by PWAS but also by researchers and doctors who praise it. So please, save us your lesson on rationality and know us better befoe defaming us publicly.

    To conclude : what about the local activists from the South you forget ? What about the sex workers from Cambodia that worked BEFORE us on the tenofovir trial and who demonstrated WITH us during the Bangkok conference. What about the activists from Uganda and Zimbabwe who call for an international support regarding the Dart trial ? because they are whore in Asia, because they are African people living with HIV, they don’t deserve the same level of protection than the white males from USA or Europe ? The Helsinki declaration is not for them ? Are they so stupid that they are manipulated by the mean antiscience Act Up-Paris and unable of thinking by themselves ? IS THAT YOUR RATIONAL ENLIGHTENED OPINION ON OUR FELLOWS ALL AROUND THE WORLD ?

    Jérôme Martin

  2. Comment by Jérôme Martin, 16/08/08, 04:00:

    Hello

    I am Jérôme, from Act Up-Paris.

    During the Mexico conference, we had a meeting with Gonsalves, Geffen and TAC on this very issue. We talked for instance of the meaning of scientific evidence, the difference of the impact of challenging the science if you are in a country where resarch is protected and in a country, such like South Africa, where it is threatened by the governement itself. We also agreed that this polemic must not damage our common work on other important issues just like the universal access to treatments or the health workforce crisis.I hope this is a beginning of a constructive discussion and the end of unfounded accusations.

    But such inflamatory posts, with ridiculous and outragous title are not helpful.

    I work as volunteer in Act Up-Paris for 10 years and I do not know Elisabeth Pisani Why are you guys so full of hate towards Act Up-Paris ? And by hate I mean « irrational anger against something ». Irrational : you bring no evidence of your accusations, you did not contact us before blaming us publicly. Why don’t you talk to us before if you think our work is so bad ? Have you ever read our work before congrutalating Geffen and Gonsalves for their “exceedingly sensible piece” ? I am sure you have not, because your criticisms would have sounded really different.

    Few activists decided to speak as district attorneys AND as the same time judges of the good activism. Who elected them DA or judge ? I don’t know.
    In a court, people have the right to defend themselves. But here, you never has asked us our comment on Gonsalves and Geffen’s text. You don’t quotes us although all articles on these topics are available on our website, and some of them are translated in english. SO RATIONAL.

    Well, I guess it is easier to speak of Act Up-Paris without Act Up-Paris, just like it is easier to talk about the conditions of cambodian sex workers in trials without them, or the situation of the PLWA in the Dart trial without them. This is SO rational.

    Is the way how Geffen and Gonsalves talk about a former activist of Act Up-Paris, naming her wordly, diffamating her on the N-9 trials an example of rationality ? Is that what you want to happen between activists ?

    Please find here our answer to Gonsalves and Geffen, in case of you are interested of evaluating directy our work. As you can see, our criticisms are based on scientific evidences and official French and international treatment recommandations, inclunding the Helsinki Declaration :

    http://www.actupparis.org/article3482.html

    On the particular theme of the Orange Farm trial on circumcision, you will find here a letter from the director of the French Aids Research Agency, Jean-François Delfraissy, that disproves all the accusations of Gonsalves and Geffen. They read this letter last fall : it is SO RATIONAL to repeat the same accusations today although they get the evidence that they were wrong ! So please, READ THIS BEFORE CONGRATULATING GEFFEN AND GONSALVES AND BLAMING ACT UP-PARIS.

    http://www.actupparis.org/article3475.html

    And here is a summary of all our articles we have written on the mentionned trials :

    http://www.actupparis.org/article3478.html

    Some of these textes are well known, for a while, by Geffen and Gonsalves. But, of course, they never quote them : this is SO rational. Some of the texts are in French, and we have better to do than translate them for people who never read the english articles we translated. But why could we not talk, for a change, in FRENCH ? Why is it always to US, other people than USA, to make this kind of linguistic efforts ?

    A crucial point : I just want to quote the introduction of our answer to remind every one that when we work on these ethical issues, we do it WITH THE PEOPLE THAT DIRECTLY EXPRESS CONCERNS. YOU CANNOT IGNORE THE FACT THAT THE SEX WORKERS IN CAMBODIA OR PLWA IN UGANDA ASK FOR SUPPORT OF THE INTERNATIONAL COMMUNITY . And we were few to give them this support.

    QUOTE :

    “We point out also that in the analysis that they make of the criticisms formulated against certain trials, the authors of the article completely underestimate the pioneering role played by local activists, for example in the case of the DART trial or the tenofovir prevention trial. Worse yet, they imply that Act Up-Paris manipulated these activists— as if the sex workers in Cambodia, PLWAs in Uganda and civil society in Cameroon were so easily manipulated and incapable of taking the least initiative. In their attempts to disparage us, the authors of the article infantilize PLWAs, activists and organizations in developing countries. This is insulting and unacceptable.”

    END

    If you want to keep going with such a discussion, please include people from Uganda, Cameroon, Cambodia. I already ask to some of them to react to your posts.

    Talk to all of them about their own situation that you know better than themselves, say to them that their are puppets manipulated by the mean antiscience Act Up-Paris. Tell them that just because they are sex workers or African, not living in the White America or the White Europa, they don’t need the same protection in clinical trials because it is antiscience.Tell them that the Helsinki Declaration is not for them, just for us, white male people from rich countries. Patronize them : because that’s just what you are doing by forgetting them. I could talk peacefully on all other issues mentionned in Gonsalves and Geffen’s text, or in your post, but not on this precise one. Don’t you understand how shameful it is to ignore entire populations like that ?

    Well keep showing us the rational light in such a way. Meanwhile we will keep working WITH the researchers and WITH the pharma industry which means, sometimes, challenging them, including with strong, public actions. We can do both.We organize public actions when we think that the situation cannot be imporved by a discussion – because the power relation does not allow it. And we peacefully and sometimes successfully meet twice a year with every representative of the pharma lab to discuss on their future trials, we sit in different councils of the French Resarch Agency and other institutions.

    So, save us your lessons on rationality, we have nothing to learn about treatment activisme from DA or judges, and everything to learn of peers communities who don’t forget the others,

    Jérôme Martin
    Act Up-Paris

  3. Comment by Melissa Ditmore, 23/08/08, 12:33:

    Dear Elizabeth, I am surprised to read your description of ‘harrassing researchers’ when the Cambodian and Cameroonian tenofovir trials were stopped at the behest of the participants due to unethical practices like a lack of translation. Translation is inherently required for informed consent – that absence alone renders the research unethical, let alone the lack of provision for long term care for those who seroconvert during the trial or experience side effects as a result of the trial. Don’t take my word for it – these problems were described in The Lancet and elsewhere including during the IAC in Toronto two years back. I’m baffled that this is being discussed this way today, especially as Gonsalves himself participated alongside Cambodian sex workers in the trial protests in Bangkok.

    And I’m sorry we didn’t get to meet during the most recent conference – this would be a great chat in person.

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