Dean's World

Defending the liberal tradition in history, science, and philosophy.

The Value of AIDS Cocktails (Answer to "Pharma Bawd")

The anonymous "Pharma Bawd" recently asked if I am ignorant or dishonest regarding recent findings on Highly Active Anti-Retroviral Therapy, i.e. the "AIDS cocktails" that we've all heard so much about. In evidence of my dishonesty and/or ignorance, she cited this Lancet Study article I wrote on September 1, wherein I quoted Hank Barnes.

I took Hank's word for it when I wrote that. Hank's a man I personally know to be honest and honorable if not always correct. (And wouldn't it be nice if we could all say that about each other?)

Now in truth, I do not, and never have, believed that the question of AIDS etiology should be worked out through weblogs. Weblogs might play a valuable role in raising questions and forcing the research community to be more forthcoming to the taxpayers, but I do not think webloggers like me can answer most of the hard questions.

What I do think, however, is that weblogs can force both science journalists and taxpayer-funded researchers to be more honest, more transparent, and more accountable for the tax funding that researchers receive.

I also repeat something I have said many times: if you are receiving taxpayer funding for your research, then there is absolutely nothing wrong with everyday taxpayers asking questions, even hard and pointed questions. We've given you tens of thousands, hundreds of thousands, even millions or hundreds of millions of dollars to pursue your research. On some subjects, such as Global Warming, Cancer, Heart Disease, Diabetes, Earthquake Research, or AIDS, we've given you literally billions of dollars of our money.

In the particular case of AIDS, we taxpayers have now spent more money and more man-years than we did in both the Mercury and Apollo missions. We spent fewer years, and fewer dollars, putting a man into orbit and putting a man on the moon than we have so far on HIV (or cancer, for that matter).

Yet to this day no one in the HIV research community can tell us exactly the mechanism by which HIV destroys the immune system. The old theory, that it acts primarily by targeting and killing T-Cells, has already been discredited. No one I'm aware of, including the anonymous "Pharma Bawd," claims that this is what this virus does. So what does this virus do exactly?

I remember well when David Ho introduced the AIDS Cocktail (HAART) to the world and told us that attacking the virus would fix the problem. "It's the virus, stupid" was the war cry. And initially, Ho's cocktails were hailed as the great breakthrough. By using PCR amplification, they claimed they could measure the amount of virus in a person's system and attack that virus directly. If we could lower the amount of virus in someone's system, we could extend their lives.

This was all in the early 1990s, more than 10 years ago. And the initial claims were promising. After all, at the time, anyone diagnosed with AIDS was supposed to be dead within a year or so, and they were horribly sick until they died. Suddenly, after going on the non-AZT cocktails (or cocktails with a lot less AZT in them anyway) they got better and even started to live longer and feel better.

Most said, "Wow, these drugs are awesome! Patients live a lot longer and feel a lot better!"

A few of us said, "Wow, so these drugs are less toxic than AZT, so they live longer. Huh. Well that looks like progress anyway."

Now in 2006, a Lancet study has concluded that the AIDS cocktails do not increase lifespan. "Pharma Bawd" says I'm stupid and/or dishonest because she says the study only says they don't live longer during the first year. They don't live any longer during the first year, but after the first year they supposedly live longer. And Hank's a liar because he misquoted the study.

OK, I've read the study. Twice now. I admit that some of the language is dense and, as a non-biologist, I can't understand all of it. I understand most of it, but some of it still confuses me. But, to be fair to the study's authors, they were not writing for laymen like me. Nevertheless, they wrote this conclusion:

Interpretation: Virological response after starting HAART improved over calendar years, but such improvement has not translated into a decrease in mortality.

In short, the virus (measured by PCR amplification) went down, and the leukocytes went up, but the patients didn't actually live longer. During the first year anyway.

This for a virus that they used to tell us was 100% fatal within a year or two, and for which they told us that HAART (i.e. the cocktails) was the miracle that extended lives. The drugs were the reason that Andrew Sullivan and Magic Johnson are still with us, they told us.

Now, in 2006, it's this: "If you have AIDS, these drugs cannot improve your lifespan over the next year. But possibly, if you keep taking them, then past 1 year you might live longer. If you don't die in the first year." According to the anonymous "Pharma Bawd" and her better reading of this paper, anyway.

If I'm reading it right, and accepting all of anonymous "Pharma Bawd's" assertions, that's what it says. So I ask anonymous "Pharma Bawd" if she thinks I'm quoting her correctly. She's smarter than me after all, so let her explain if she thinks I've been unfair.

In any case, just for anyone who cares, here is the entire paper verbatim (which anonymous "Pharma Bawd" supplied me with, and for which I thank her sincerely). So I invite you to read it and tell me if I've missed something important, or been unfair somehow. It's a PDF, so you'll need Acrobat Reader if you don't have it already.)

So, you read it. And tell me what you think I've missed, or if you think I've been unfair to the authors somewhere. I won't edit you. You just go ahead and tell me what I missed.

I also offer to give Pharma Bawd an unrestricted comment account on Dean's World, with the following caveats: given that I've had more than one person pretend to be a "scientist" in the Dean's World comments, I will not allow total anonymity for those who wish to speak on such matters. If they are speaking *as professionals* in their *personal field*.

I don't care if some anonymous physicist or biologist or archaeologist or lawyer or architect or psychologist wants to comment upon matters unrelated to their field, or just leave off-the-cuff comments. But if you want to comment here and actually talk about your area of specialization, *as a professional*, then I'm not going to put up with complete anonymity anymore.

If you want to claim to be a scientist, and to speak as a scientist, then you must reveal your actual name and your actual credentials. Preferably publicly, but if not publicly then to me privately. I just need a real name, a real email address, and real phone # and credentials that I can verify.

You don't have to go public with it. If you ask me to keep it private I will. Ask any of my co-bloggers or friends online and they will tell you I am an honorable man. If you ask me to keep something private then I will.

But I will no longer put up with people like "Dale," the anonymous "molecular biologist" from the University of Rochester med school who made all sorts of bloviating claims but could not back them up when (repeatedly) challenged, and whose best defense of his anonymity was "Professor Harvey Bialy might send me nasty emails."

I'll give a public forum to any credentialed scientist who wants to answer these questions publicly. I'll even bend over backwards: so long as you provide me and me alone verifiable evidence of your credentials, I'll let you in. And give you my word that I will never publicly "out" you, if you're too afraid to just publicly identify yourself.

So now it's your move. The most conservative interpretation of the Lancet paper linked above is that during the first year of treatment the AIDS cocktails do not save lives. So are you willing to stand by that or what? And is that an unfair question for me, a taxpayer who has given you billions of dollars and decades of support to ask?

You tell me.

And let anyone tell me (or any of my co-bloggers) if they think I'm being unfair in my questions.

Posted by Dean | Permalink | Technorati Trackbacks
Martin L. Shoemaker (www):
You can't claim the mantle of authority if you can't provide your bona fides. That's pretty simple.
9.18.2006 8:49am
Dave Schuler (mail) (www):
I've posted a few peripherally-related remarks on the rise of fundamentalism over at The Glittering Eye.
9.18.2006 10:03am
Dishman (mail):
Dean, how dare you question their patriotism analysis hockey stick integrity hand-waving credentials?

/sarcasm

My assessment is that we don't really know what we're doing with much of anything, but we fake it pretty well most of the time.
9.18.2006 10:57am
McKiernan:
You're being unfair very unfair. The history of blogging on DW is replete with hundreds of anonymous commenters as well as some scientists with
multiple pseudonyms. That actual working scientists may have something to say but only in a context you personally dictate indicates a very uneven playing field with movable goalposts. Unfair. I'd say yes. Important. Not really, as the commenter may choose not to comment at all. Yet, that doesn't seem to have satisfied the rule maker at least in the arena of HIV/AIDS discussions.
9.18.2006 12:26pm
Martin L. Shoemaker (www):
McK: Huh?

Existing rules have been abused. New rules have been put in place to try to prevent future abuses. If that's unfair, blame those who abused the original rules.
9.18.2006 12:34pm
McKiernan:
The person singled out has never abused anyone. If anything, he has been the abused if you search the archives.
9.18.2006 12:41pm
Dan the Highway guy (mail) (www):
Personally I don't think it's being 'unfair' at all. If someone wishes to argue from authority, saying that 'what I'm saying is right because of my background and experience, and you should believe me because I've worked on this', the host (Dean) has the privilege of asking for some proof of that person's authenticity. In a field where he's going against the grain of popular thought, and where there is MUCH disinformation, anonymous argument from authority can do much to spread merely inaccurate or maliciously false ideas and concepts.

I think it speaks well of Dean that he is looking out for US, the readers of his comments, by requiring those who would try to make claims from authority at least be personally vetted by him, even if he may disagree with their opinions.
9.18.2006 12:58pm
Martin L. Shoemaker (www):
Nice conflation of "abuse of the rules" with "abuse of the individual". That makes it really easy to miss Dean's point.

For the record, to this reader, Dale came off as an ass. The only person who came off as a bigger ass (again, to this reader) was Harvey Bialy. So two asses had a spat, and I mostly ignored them when they started acting like asses.

But Dale's specific offense -- what Dean is specifically criticizing here -- was claiming that Dr. Duesburg's (sp?) data and/or methodology were flawed, and then blowing off requests for details while saying the equivalent of "Trust me, I know what I'm doing"; and then repeatedly refusing Dean's request for proof that he did indeed know what he's doing. That was abusing the anonymity rules, which Dean had already been tightening.

I'll say it again, since you seem to have missed the point: you can't claim the mantle of authority if you can't provide your bona fides. If Dale had cited the specific flaws and supported it, Dean would've said, "Hey, this guy is either a talented layman, or his credentials are as good as he says." If Dale had given Dean proof of his credentials -- even privately -- Dean would've said, "Well, he's in the field, and I'm not, so I should give added weight to his opinion." He would've cut Dale some slack.

But Dale tried to have it both ways: "No, I've got no time to prove what I'm saying it; and no, I'm not going to prove I know what I'm saying. You're just going to have to trust me." But an anonymous claim of authority is worthless.
9.18.2006 1:12pm
Martin L. Shoemaker (www):

In a field where he's going against the grain of popular thought, and where there is MUCH disinformation, anonymous argument from authority can do much to spread merely inaccurate or maliciously false ideas and concepts.


Well, to be fair, Dan, Dale was going with the grain of popular thought.
9.18.2006 1:13pm
Dan the Highway guy (mail) (www):
Martin, I was talking about Dean going against the grain of popular thought. I did kinda switch thought in mid-stream, tho, so I certainly understand the confusion.
9.18.2006 1:35pm
Martin L. Shoemaker (www):
Oops! OK, I can see that now. Sorry.
9.18.2006 1:36pm
rvman (mail):
Dean: By my read that study doesn't show what you think it does. It is comparing HAART-only outcomes in 1998, at which point protease-inhibitors become available, to prior periods, when HAART was less well developed. It stops in 1998 because of treatment selection - after 1998, you can't be sure changes to outcomes are caused by improvements to HAART or by segmented diagnosis and prescription. The result is that, over the HAART era, there has been no significant change in outcomes in the first year of HAART treatment, despite the fact that 'fine-tuning' and more precise dosing has improved anti-viral effects.

It makes no attempt to compare outcomes from HAART to outcomes from AZT, or pre-AZT outcomes. There are no patients in the paper from those eras, since it tracks only cohorts who were completely untreated prior to starting HAART protocols. So it says nothing about AIDS the Virus, or about the overall effectiveness of HAART, only about the effectiveness of incremental improvements in protocol.
9.18.2006 4:31pm
rvman (mail):
(AIDS the Virus) should be AIDS vis a vis the HIV virus.
9.18.2006 4:33pm
rvman (mail):
Additional: The upshot of the research is that additional reductions in viral load below a certain level don't affect mortality. The risk from the virus isn't linear with viral load - in most forms of risk (poisons, radiation, infection, for example) there is some threshold point at which point risk begins to slope upward more dramatically. This treatment even in its more primitive states was sufficient to reduce loads below threshold. There is no data in the study about patients with viral loads generally found in terminal AIDS patients.
9.18.2006 4:39pm