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
