However, Jérôme is missing the point completely: whether or not the Geffen and Gonsalves piece is 100% accurate, it is certainly in the public interest, and you’re totally within your rights and responsibilities as a blogger to draw attention to it.

Regarding other actors than activists, like researches, political leaders, and so on, Act Up-Paris peacefully discusses AND strongly protestes WHEN NEEDED. I thought that every activist does so.

Jérôme

However, I just wanted to say thanks for this blog making me laugh – ActUp Paris complaining that someone else didn’t sit down and peacefully discuss their differences with them is the funniest thing I’ve read this week.

So, for the first issue, here’s my take: You don’t need to report both sides of an issue, and you certainly don’t need to get a quote from everyone you criticize, especially anyone criticized only vaguely, on your blog. Newspaper columnists don’t do that, and I see blogs as very similar. You just need to be fair and truthful, which I’m pretty sure you always try to be. The post that so offended Jérôme Martin criticized activists in general — and you have a lot of experience with activists — and you only mention that the article you link to takes ACT-UP Paris to task specifically. You don’t actually criticize ACT-UP Paris — you don’t even remotely imply “Act Up-Paris is antiscience” — so it seems to me that Jérôme Martin is misreading your work as well as being over-sensitive.

As for the second issue, well, I wouldn’t call someone dumpy on my blog. But my mom reads my blog and whenever I write anything too snarky she calls me up and scolds me.

I think this is too simple to reduce my post as an issue of Freedom of Speech or blog standard.

Well, of course you are free of speaking, free of reporting someone else’s opinion. But when you publicly blame an organization with this very opinion, damaging potentially its work with the PLWA or the researchers, I think that you have to found the accusation, particurlarly when you want to publicly gives lessons of rationality . Your only evidence was Geffen nd Gonsalves ‘s article and you never tried to go beyond it, although it is obviously full of wrong analyzes. Tht’s why I regret you didn’t contact or quote us. Of course, you are not journalist and you don’t have to follow the same ethics as a journalist. But once again, you want to be rational : so you have to give your readers all the aspects of a polemic. So you had to contact or quote us. Sounds pretty rational to me.

Did you know that we worked with sex workers in Cambodia on the tenofovir trial ? Gonsalves and Geffen denie these “whores” any “wisdom” when they write : “The groups we discuss here couch their anti-science agenda in progressive rhetoric. They
therefore persuade some well-intentioned people and organisations unfamiliar with HIV
science to support their causes.”. Of course, sex workers CANNOT be familiar with HIV science ! Is that the kind of opinion you do want to support ! Well, you are free to express this opinion.

But I think the problem is NOT your freedom of speech or your blog standard.

The problem is, activists disagree on ethical issues in research. Some activists think that the rights of some people in clinical trials – particularly sex workers, drug users, or PLWAs in some countries – must be erased for the progress of science. Other like Act Up-Paris do think that these rights must be enforced and that is a sine que non condition for the progress and rationality of science : if people fell well in a trial, they follow up the conditions, even bad. This sometimes means that researchers have to slow down with their trial and use more efforts… and money.

Instead of discussing peacefully on these issues, some activists decide to act as DA and publish inflamatory messages on it. You choose to relay one of this message. So you choose to reduce an important debate to a simple unfounded accusation “Act Up-Paris is antiscience”. I do regret it, not to challenge your freedom of speech or your blog governance, just because this debate deserves much better.

Best

Jérôme Martin
Act Up-Paris

Blogs are personal expressions and what seems like a casual comment to one person may seem like the end of the world to another – and, in most cases, we sit at blogs writing away with little direct editorial input to moderate our tone. So you express an opinion? There’s nothing wrong with that and there’s nothing wrong with Jerome Martin coming back at you for it – he’s got his opinion, you’ve got yours. If you can say your piece then he should be allowed to say his … even if he does say it on your blog.

Move on – it’s just one’s and zeros – it doesn’t make either one of you right, although I personally believe that you’ve probably got a better handle on it than he does … but that’s just my opinion and I don’t have a blog.

Just wanted to let you know that I’m almost done reading your book, signed onto your blog as soon as I started and am really enjoying reading it. I have a ton of questions and probing I’d love to get your feedback on (once I complete my Msc paper in two weeks!). Please take a look at the Global Youth Coalition on HIV/AIDS (GYCA) website – it was co-founded by myself and a couple of other young people at the Bangkok conference in 2004 and I’m quite proud of where we’ve come. Would love your thoughts on what you think of it (at least just from the site).

In the meantime about the blogging – I absolutely agree with you – you definitely have the right to your opinions but I suppose on this virtual world, you need to be ready to take ‘challenges’ if you will, by equally passionate and opinionated people. If you let people respond without screening them, this is the kind of risk you take so you just have to be tough on that.

I’d go into a rather constructive response to Jerome Martin from Act Up and will attempt to do so in a couple weeks. As an ‘activist’ (in the sense of having participated in demonstrations (organized by Act-Up and others), protests, lobbying) as well as someone who very much believes in what Gonslaves and Geffen wrote about, I’m keen to perhaps continue the ‘debate’ if you will. The fine line between trashing pharma booths at the international aids conferences to make a clear statement of (what I believe is) frustration at the lack of access to meds, etc and pursuing discussions with Pharma to negotiate lower prices, incentives, etc. When the latter doesn’t work and your friends are dying around you (as you know firsthand), you become extreme…this applies to people in other sectors too. I’m quite sure it’s from a feeling of helplessness.

Please don’t stop being open and honest about your writing. You are very constructive, I think, in your writing and I think Jerome took your statement a bit out of context, impassioned by the work that needs to be done to get medicines accessible to the types of people he referred to. He should read your work before criticizing you in what I think, was a fairly personal attack which was unnecessary.