this is our one demand

It was a busy, irresponsible summer full of visiting and hiking and revisions. But not much in the way of blogging. I’m not apologizing, I’m bragging. Just to be clear. There may or may not be in increase in posting now that the weather may or may not be getting less cooperative. Then again, there’s hockey to play.

Today, however, I came across the following - a creative, subversive, beautiful, and heart-breaking response to media complaints that the Occupy Wall Street movement has not stated specific goals. That they are just protesting, willy-nilly and all, and don’t have enough direction to their dissent. How dare they not have a published set of reasons! How dare they not have made a list!

This is their response, as copied and pasted from wilderside.wordpress.com: 

This is the fifth communiqué from the 99 percent. We are occupying Wall Street.

What makes experimenting on women okay?

A few days ago I promised to blog on this story. Well, actually, I said I had to in order to address my overwhelming sense of angst. I said I'd do it in a few days in the hopes that I could find a second source for the story to provide me some clarification and perspective.

In regards to the former, no such luck. Just multiple versions of the original AFP piece (seen here in Google news) edited more or less depending on where it was printed, which wasn't too many places. Which is to say that barely anybody paid any attention.

In regards to the latter, I might have a little more perspective, but still most of the angst. If anyone reads this that can make an argument in favor of this kind of testing, especially the ones I'm taking issue with, please chime in. This is definitely not an area of expertise for me, but the angst is undeniable right now. If I'm wrong, please educate me.

At first glance I was mortified by the numbers - 9000 participants and no statistical difference in results between those using the prototype gel on trial and those using the placebo after 52 weeks - and the apparent risk these women were exposed to. Then I got angrier at the word "placebo". Then angrier still at the phrase "coercive sex".

You can read the articles (see above and below) to get the blurry details of this particular study and the buzz in the HIV/AIDS activism community about the promise that this research holds, especially for women in the most heavily impacted parts of Africa where "coercive sex" is a disturbingly commonplace issue. My few days of distance and reading have given me some perspective, as I'd hoped, but I still have some serious questions that I need to ask.

First, while I'm still calm, I think I'll start with the reason/excuse these trials are somewhat common in southern Africa (as best as I can explain it anyway). As the article suggests, "coercive sex" occurs too frequently in some of the regions listed, regions that sadly also possess some of the highest rates of HIV infection on the planet. An explanation for why "coercive sex" is so frequent would take pages,or hundreds of pages, not sentences, but it is a bit more complicated than the way we think of it in more developed parts of the world, partially due to extreme poverty, and largely due to dramatically different cultural perspectives on gender equality.

I'm not making a judgement call on that idea yet. Let's assume that's the way it is for now and keep moving.

In that environment, if we pragmatically accept that it's happening and will continue to happen, then the very real dangers that these kind of trials present, dangers that would never be accepted as justifiable in the "developed world", suddenly seem like a better option than no trial at all. It is, they say, that desperate.

For example, phase 2b trials of a drug called Caprisa 004, a gel form of the AIDS drug Tenofovir, were concluded in South Africa this year. Among the participants who reported using the cream according to directions, there was a 54 percent prevention efficacy rate, and a 39 percent efficacy rate overall compared to regional trends. That is definitely better than nothing. As one advocate suggested, assume that without Caprisa 004 ten women will contract HIV. With it, only six will.

I have a hard time jumping up and down in triumph over those numbers, but I can understand how it's good news just the same.

HOWEVER, the drug mentioned in the first article, the PRO 2000 gel, was in phase 3 trial, the "widest and most exhaustive" stage of testing. Like I said, 9000 participants. There's no info on how effective the drug was in earlier phases, but an insignificant difference between the test group and the control group in this double blind test is very bad news indeed. Just ask the women who contracted HIV. The article does not include exact statistics, only that there was no difference between PRO 2000 and the placebo. I guess only percentages count in East Africa.

But at least the tests concluded that it's safe for the women to use... Useless, but safe. Okay, the angst is back.

The people that run these trials will tell you that the women would have contracted HIV anyway: They were sexually active in a "coercive sex" environment in which they do not get time or the option of insisting on condoms (I really promise I'm coming back to that "coercive sex" concept), so they weren't put in any greater danger than they would have been anyway. Part of that might be true, and when the drugs being tested are like Caprisa 004 and show real potential then perhaps... perhaps there is a justification for levels of danger that we would consider unjustifiable by our privileged western standards.

But how does a drug get to stage 3 without some expectation that it's going to actually do something? And if and when it does, even with drugs like Caprisa 004, how is a double blind study justified when the scientists know that a control group will be given a placebo cream they are told will help prevent infection and then sent out to expose themselves to HIV? And that's not even including the two tests I read about where they encouraged women to either use a spermicide alone, or encouraged them to use a diaphragm with lubricant, neither of which have ever shown any reason to encourage hopes of efficacy! That makes about as much sense to me as, respectively, testing to see if Pledge is an effective protection against battery acid, or using a swim cap and sunscreen as protection from gunfire.

This is where my sense of dissonance starts to kick in.

I know that people with cancer and Huntington's and Alzheimer's participate in drug trails all the time. And I know that when they do they are told they might get the real thing and they might have a placebo. And I know that the participants weigh those risks and take the chance anyway, for a myriad of reasons.

But it's one thing to roll the dice when you're already sick and have no other hope, and quite another to be asked to do so when you aren't sick and the trial expects and requires that you expose yourself to an incurable and fatal disease. And it's a whole extra level to think that these women are being sent out with a diaphragm or spermicide to act as guinea pigs for western big pharma to effectively provide baseline data.

And that's the crux of it. We get a nice PR spin most of the time regarding these large drug tests occurring in the "developing world", but the truth of the matter is that large pharmaceutical companies go to these areas because there is a desperate population extant, uneducated in their corporate ways, and scared enough to buy the snake oil they're pedaling. And, to be clear, that population is female and deprived of power.

The pharma companies say that they are looking for new drugs to help treat the HIV/AIDS crisis, and they are, but when they find effective drugs and get approval in Europe and NA those drugs will not end up back in Africa any time soon. Just like the drugs that make up the effective HIV treatment cocktails now (which were also tested extensively on Africans), they'll be priced as high as possible and marketed like crazy to the developed world. It will take years and massive amounts of UN/NGO/activist pressure to get those drugs back to Africa where they'll actually be useful to women in desperate need.

That's the truth. Southern Africa is the incubator and petri dish of the large pharmaceutical companies right now. The companies' litigation exposure is minimal, the crisis desperate enough to make untenable practices seem reasonable, and the costs far lower than they would be in a developed nation.

These women are being used. Spin it however you like, but ultimately they are being treated like AS disposable lab animals.

The disconnect that must be present to treat people as lab fodder in this way astounds me, baffles me, makes me queasy. It makes me want to burn myself with cigarettes and play with sharp objects. It also makes me wish there were still a few Jonas Salks in the world of pharmaceutical research. (And if there are, please let me know - I could use the lift right now.)

And finally, before I let go of this: "Coercive sex"? Really? Isn't this just a denialist way of saying rape? Does it make it easier for researchers to call it "coercive" so they can sleep at night? Are they trying to distinguish between rape by a stranger and rape by a husband? And if they are, why?

A rape by any other name is still rape, and trying to blur over it with soft language does nothing except enable the rapists. Yes, there are cultural issues that might explain why rape occurs in some places and some situations more often than in others, but these reasons aren't excuses. Not fucking ever or anyplace. They stop being valid as explanations as soon as we know they exist and then do nothing to change it. I find the phrase offensive in the extreme. For the press to use it is tantamount to tacit conspiracy. Call a rape a rape, god-dammit, and quit making excuses.

And then, of course, maybe there's something we can do about it. For ideas on what to do and whom to support check the links below. I'm not saying "these are the ones!", just that it's a place to start. If you know of more, please link to them in the comments. Thanks...

Human Rights Watch
Solidarity for African Women's Rights
Equality Now
UN Women Watch

...one of those days...

Do you ever have one of those days? You know the kind....

One of those days when the overwhelming weight of the world just seems to be bearing all of its deep gravity well down on you? When all of the culpability of the species just seems to be unfucking avoidable and you have to own it, hold it to you at the same time that you're trying to tear it out of you?

One of those days when you can't resist to the urge to take on the sins of your race, your country, your gender, your species? When every story, every song, every image reminds you of the incredible fuck up this all is, all of it, in spite of the good things, because of the unmitigated horror of the bad?

When the black hole is so dense that it's hard out get out of bed, off of the floor, out the door? When the sunlight hurts and smiles feel like razorblades? When the thought of peace, the ephemeral unlikelihood of it, the whisper of its possibility and the truth of its goddamn improbability, reduces you to tears?

When you want to slap every child you see push another down, ram your car into every self-involved driver that didn't see the person they almost ran over, strangle every self-serving politician you watch lie, again and again and again, destroy every person that ever hit their spouse in anger, knowing the whole time that it's the wrong answer to every one of those situations and not caring?

Knowing that even if you could, the shame would just be worse afterward?

One of those days when you can't see the hope through the fear, or the love through the hate, or the intelligence through the ignorance? When bigotry seems to be the rule and tolerance – not even real acceptance, just tolerance – looks like it's about a million fucking light years away from being possible?

When laughter makes you want to cry, crying makes you want to scream, and honesty makes you want to smash every mirror in the world?

One of those days? Do you know the kind I'm talking about?

I'm having one.

Sometimes it's good to just sit in awe and fucking own it for a day.

S'okay though. It's just a day. Tomorrow's a new one, and things'll be better. It's just one day.

“Everybody's scared for their ass. There aren't too many people ready to die for racism. They'll kill for racism but they won't die for racism.” Florynce R. Kennedy

I’m having a really hard time editing the novel today, and I absolutely have to be getting that shit done, so I thought I’d just rant a bit and get what’s on my mind off of it.

…no jokes about how little there is on my mind on the best of days. You’d be preaching to the converted right now anyway.

Why am I distracted and pissed? The news. I know - huge fucking surprise. This time though I’m not even at my mother’s, and I’m not paying attention to CNN or Fox. Yes, Virginia, there really is a dearth of objectivity in media even in alternative, independent land.

I suppose that the Beck/Palin revival in Washington had something to do with it. The Park51/Cordoba House/Ground Zero Mosque bullshit also added to my angst. So did all of the alternative responses to both. Seems to me like everything just keeps getting more and more polarized, and the people that, according to my bias, should be enlightened and know better just, apparently, aren’t and don’t. I have seen the enemy…, and all that. And so the voices get louder, screaming across the growing divide. There aren’t any solutions out there, in that place where we yell epithets at each other. It’s tempting to give in sometimes and contribute to the erudite insult combat, but the results are generally discouraging, and I always feel a little dirty afterwards.

Wars of words aren’t really any better than wars with weapons. The body count appears lower, but we just don’t count it right if we think so. If we counted in terms of wasted brain cells and lost time and the new barriers of ill-intent we erect the attrition rate would be horrific.

This is not, of course, to say that debate and disagreement, even passionate disagreement, are bad things. But when we lose grasp of reason and self-control there is no upside. We’re supposed to be aspiring to something better, aren’t we?

All this openly racist banter that’s going on makes me wonder what it is our elders and parents fought for back in the not-so-long-ago. We won some new laws, but apparently didn’t win that many hearts or minds. MLK (oh man, you are so missed) must be rolling over like a motherfucker.

I openly pondered on FB the other day that this might all be a sign that the military/industrial/political complex has just figured out that a domestic conflict might be more profitable – put the war closer to the combat, so to speak, and save all that expensive shipping costs.

I know; how dark and depressing a thought is that, only because it seems to fit with a profitability mindset. It’s almost believable.

I also found myself wondering whether all the craziness was just the final frantic gasps of organized fanaticism, er, I mean religion as it kicked and spasmed its way into the grave.

See? I am an optimist sometimes!

Okay, I feel better. Back to making my make-believe world marketable.