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I am distressed that Poz is insinuating that Cambodian sex workers and other trial participants were manipulated by outsiders to protest, because Poz used to have a better record of covering the issues with accuracy. Cambodian sex workers spoke frankly about human rights violations in the cancelled tenofovir trial in two sessions at the IAC in Toronto two years ago, and people commented that they had not understood what happened until then. Cambodian sex workers publicized their objections to conditions of the trial and their treatment by the researchers in the Lancet and other publications. Cambodian sex workers instigated the demonstrations at IAC four years ago in Bangkok because of human rights issues, not outside influence. Women's Network for Unity sought international support. To imagine that people in the developing world seeking the conditions of trial participants in industrialized nations (such as long-term care for those who seroconvert during a trial,) demonstrates at best that the writers have unforgivably ignored the rights and needs of trial participants in the developing world.
Thank you, Peter, for posting Mr Solomon's letter. His thoughtful and considered words point out how sad and trite we Americans can get. It is far easier for us in the USA to be inflammatory and schadenfreude has become a national pastime. I am not a hypocrite though; I do my fair share of verbal-bomb-throwing! Dissension among AIDS activists is nothing new, Mr Solomon, trust me! I am still furious at the US Southern AIDS Coalition who helped destroy much of the good works no longer fundable with Ryan White federal money. HIV non-profits here on Long Island are turning down requests for support service assistance every single day. I do not underestimate the overwhelming problems faced by our African and Asian brothers and sisters, but I also will not let those here at home suffer in silence either. We can thank the divide and conquer mentality in the American Congress for this mess - instead of a national policy of providing support to all, we have region pitted against region, we have activists pitted against activists. And sad to say, I will fight for the poor here first and foremost. Does that make me wrong? Does that make me evil? I just don't understand why this must be. There is no good reason that access to services in the USA should exist by accident of geography! I am tired. Fighting is exhausting. We lost the care in the CARE Act and now must fight State and local government cutbacks. Why must we be fighting for housing, heat, and food in the 21st century America? HIV will not stop its spread any time soon. As long as we remain silent to poverty, silent to homophobia, silent to racism - HIV will continue its deadly march. Oh, and yeah, I've been singing this hymn for almost 20 years now. The new CDC HIV incidence numbers sure didn't come as a surprise to me..
Helo to all, well its not my way to get involved in discusions on blogs but again i cant resist this, its very sickening again to me as a Ugandan to see Gregg et tal opening up other avenues to bolster their false and unfounded acusations to felow activists ie Act-Up Paris an its really so sad that others are also getting on the band wagon to complement what they seem not to have real evidence but just Gregg et tal said so.We as Ugandan activists have responded to Gregg et tal article and called for his response to us and he has never responded to us so i think many of those who are trying to get on the band wagon of Gregg et tal have no respect for us as activists from the south, is it because we do have enough capacity to pay for the internet and keep responding to such nasty accusations. To put all things clear can those who are pretending to support and even apploud Gregg et tal's read my response which he has never responded below? As a ugandan i feel so let down that Act-up Paris is now being blamed for having come forward to make our voices and concerns be heard especially from the commradessome of whom passed away participating in the DART trial; Read my response to Greg et tal's article; Dear all after along time i cant resist to respond to this and its for the purpose of putting some issues straight that are indeed being inacurately portrayed in the article published by Gregg et tal. First and fore most its really so unfortunate that up to now there is still such misrepresantion of fellow activists because we thought this had been cleared along time ago. Its totally not acceptable for Gregg et tal to go to such extent of attacking fellow commrades and even AIDS organisations that have worked and still working tooth and nail to improve the lives of people living with HIV/AIDS especially in Africa. In the article below Gregg et tal has continued to give all this false impression that ACT UP Paris is against research, and has worked very had to shut down research/trials in developing countries, this is not true. Its not true that its ACT UP Paris that brought up the concerns that were sighted within the DART trial. This was the initiative of me and my fellow ugandan commrades some of whom were and are still in this trial, it was not ACT UP Paris. We raised alot of concerns way back even before the structured treatment interruption arm in this trial was stopped and we always recieved responses Gregg himself that were even refuting our concerns on this trial. Never at any point did we ever say that we were against this trial as Gregg is portraying in this article but we were simply saying hey commrades look we have some concerns , some thing is not going on well here and our real objective was to improve on some issues within the trial. We as ugandans respect and acknowledge the struggle and good work done by some of our prominent researchers and scientists so we were never at any time against their advancements as it seems to be portrayed. ACT UP Paris came to our rescue after we had cried and cried to the international activists in vain and their first intervention was during the Aids conference in Toronto and their part was just to put forward our voices, it was just to tell the world that there are some concerns from ugandan commrades in the DART trial that need to be listened to, it was not that they wanted to shut down the trial. For reasons that we never new this dint seem to apease some individuals like Gregg and since then they have decided to portray ACT UP Paris as being against research. After crossing alot of mails Gregg et tal demanded that ACT UP Paris substantiate all the concerns that were being raised on the DART trial. In consultation with some colleagues in uganda ACT UP Paris published all the concerns with detailed explanations to all the concerns and issues that we thought needed improvement, but to our surprise ever since then no one neither Gregg et tal ever came forward to either discuss the issues nor challenge them.( am sure this still exists even on the ACT UP PARIS website). If really Gregg et tal wanted to support us as ugandans i think we would have had a very constructive debate since then only to be surprised again when we see the same arguments being brought up and this time in a journal, truely some one of the caliber of Gregg should have been in position to weigh on all this. About Cambodia Gregg as also put up alot of inacurate information. It was the union representing over 5000 sex workers not a local NGO that raised all the concerns that came up which we proven to be guinine and they entailed concerns beyond ARV access. Cambodian sex workers wanted some assurances that they could get health care for any long term side effects, there were ethical concerns and this was even revealed by USAID's investigations and well known ethicists( Tenofovir trial on Lancent website). After many appeals from the activists from Cambodia it was only ACT UP Paris that went in to support them to make their voices heard and when the trial was halted its when many then realised that the concerns of the Cambodian commrades were real. So when Gregg gives the whole activism world the impression that it was ACT UP Paris that worked to close down this trial its not true, the whole world later knew that there were guinine reasons ethical and other wise that led to the close down of the Tenofovir trial in Cambodia. The same happened in Cameroon and Nigeria, all this was driven by real concerns of fellow commrades who were involved in the trial and not the initiative of ACT UP Paris. Finally i think we as activists should have the obligation to know which forums are correct to discuss our differences, attacking each other in any way yields nothing and going to the extents of portraying fellow fighters as against the struggle should stop, this is not a one man's show we are all in this war to win AIDS. Yours in the struggle againt HIV/AIDS Kapere Solomon
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. Peter, you are talking about millions of infections that could have been avoided. And why don't you talk about the REAL infections happening in Tenofovir trials that could have been prevented without stopping the trial ? Why don't you talk about the REAL infections that happened in the N9 trials while every one knows it could not work ? I work as volunteer in Act Up-Paris for 10 years and I do not know Peter Staley or Howard Grossman. 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 « telling the truth » on us ? I am sure you have not, because your criticisms would have sounded really different. Gonsalves and Geffens's article, just like some of the posts and comments here sound so much like a synopsis of "the law and the order" TV show. Few activists decided to speak as district attorneys AND as the same time judges of the good activism. Who elected them DA AND judge ? I don't know. But I know that, in "the law and the order" people have the right to defend themselves. But here, nobody has asked us our comment on Gonsalves and Geffen's text. Nobody 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 against any scientific knowledge 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 : 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, Howard, read this letter which is an evidence that Geffen and Gonsalves did not "tell the truth" about us : www.actupparis.org/article3475.html And here is a summary of all our articles we have written on the mentionned trials : 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 ? Thanks to the people who supported us even if they disagree sometimes with our analyzes. We accept rational criticisms of our work and I hope than we can have a constructive discussion to improve the rights of the people in trials - which is a sine qua non condition to a real rational and effective research. 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. Please include WOMEN when you talk about circumcision. I already asked 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 these posts, but not on this precise one. Can't you felle, can't you understand how horrible it is to ignore entire populations like that ? Well keep showing us the rational light in such a white american way. Meanwhile we will keep working WITH the communities, WITH the researchers and WITH the pharma industry. And working WITH reserachers and pharma industries sometimes means challenging them, including with strong, public action 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 from DA or judges, and everything to learn from our peers all around the world. Jérôme Martin Act Up-Paris
Once again we see ego-driven personalities put their need for identity construction ahead of the public good. ACT-UP Paris are such a bunch. They really don't care as much about saving lives as they care about being cool and having an outsider attitude. Base-line truth. Simple and embarrassing. Being cool over saving lives have hampered the AIDS fight for years. Don't give in to it! We all know they are egotists and just plain uncaring and wrong-minded
Cool - I simply smile whenever the words ACT-UP appear anywhere! I still wear my Long Island ACT-UP T-shirt; proudly have my ACT-UP Paris banner in my office; and yes, dear brothers and sisters in the fight, we all have gone 'astray' of late. Let us stop kidding ourselves: every last PWA in America has grown weary of always fighting for something or another...and as soon as we are lulled into fatigue, the great bull-shit artists of the drug companies/NIH/CDC/State AIDS Institutes have taken over AIDS activism! Look, the CARE Act is gone, folks! While we all slept, Congress with the tacit approval of bonehead 'activists' removed millions of dollars in social support services - why, do you ask? To give more money to medical and pharma companies! Hooray! So bitch all you want about ACT-UP Paris, I say, preach on mon amies! Hey Peter: Will you join me in demanding that the 'Treatment Modernization Act' be re-written? One example (I have many) - the CARE Act helped PWA's remain healthy by assisting with food, heat, and housing for more than 15 years! Under the 'TMA' (Ryan White must be rolling in his grave!), Congress and the geniuses at HRSA/HHS told our region (Long Island) that, sorry folks, no more dollars for your pesky support programs! Wonderful. I receive over a dozen calls a week from PWAs right here in New York who are lacking food, losing housing, and have no back-up for utilities help. So congratulations, AIDS activists of America! While we slept, the medical/pharmaceutical establishment pulled the rug out from under us. Restore the care to the CARE Act. And stop using poor people for drug experiments, for crying out loud!
philicia - just as chemotherapy has a very low success rate long term for breast cancer and cervical cancer etc , and people wonder are they being denied access to other medical models that may work better ,some people feel an unease with the hiv model of treatment - and the agendas. To say there are no side fx anymore is not true and it dismisses the experience of people who do struggle with them. in addition five to ten years of meds is not a long enough time to weigh up long term collective effect - if you are a very young person just beginning treatment and plan for 40 50 years - on meds. our model of hiv as a chronic condition is wrong.my view. PrEP is a crazy idea. We will create a whole generation susceptible to candida that in turn can lead to a whole range of OIs we now also associate with - AIDS. A vicious circle going nowhere , just round and round. If we start on PrEP and resistance develops which it will , then we will do what just switch to another and another of the ''arsenal'' until what ? Where is the logic. It is illogical - like flu shots. Better to take anti oxidants . When I was taking flu vaccs I got more flus than before. I take good anti oxidants live surrounded by people who get flus and I dont get any . Now if I could heal the invasive candida in my body on meds for HIV id be anyones canary :) But the meds for this ..made it worse!!! Imagine ! I am not the only one who has found this to be so and comparing notes is fascinating. As for ACT UP/Paris - it is good to see that we are not all afraid to stand up for ethical medicine. David Himmelstein at Harvard Medical School said it well when he said ''Behind false claims of efficiency lies an uglier truth . Investor owned care embodies a new value system that severs teh community roots and Samaritan tradition of hospitals, makes nurses and physicians into instruments of investors and views patients as commodities.'' Not a conspiracy exactly , more of consensus.
Laurent Coq
This article is a disgrace. The facts are so distorted, it's chocking. Act-up Paris has always been concerned about the people with HIV, wether here in the western world or in Africa or India and places where no one cared and where it was so easy to exploited misery and ignorance. They've always fought this idea that you could go in these far away countries to conduct tests that would be easier because subject to lees control, therefore faster and cheaper... and more dangerous for its participant. Act-Up Paris has won a lot of battles over the past twenty years (France gives HIV treatments for free thanks to them) and will continue to do so. Activism has never been so crucial in the age of globalization. What goes for HIV goes for GMO as well. Of course the same stupid attacks are being made to both activists. That these attacks come from the pharmaceutical industry or from Monsanto is only expected. That these attacks are being relayed by a website like poz.com is beyond comprehension. And very disappointing indeed.
August 23, 2008