AIDS Thoughts
Dean
Jerry Pournelle recently had some very sane thoughts on the subject of AIDS. CLICK HERE TO READ THEM.
In response, a fellow blogger (who I will not name because I don't want to mess with his professional life) wrote the following:
My response:Tell you what: if I win a big lottery, I'll spot the money for the Bayesian analysis. There are questions as a clinician I dearly want answered... and although I disagree with people who say "HIV is NOT the cause of AIDS", I am not at all convinced that HIV is the ONLY cause of AIDS. (A two-step or multi-step etiology is at least as likely for HIV-AIDS. I'll also bet you 20 bucks that in 20? 50? years, AIDS will known to be like diabetes, with several different causes leading to a common pattern of symptom and disease, and we'll talk about "type 1 and type 2 AIDS"...
(But not if someone doesn't ask the right questions.)
cordially, Bill Ernoehazy, MD dedoc@mac.com
Dr. Pournelle replies:
Pretty close to my views, but your credentials are better. For those unfamiliar with dedoc, Bill is a long time friend, contributor to one of my anthologies, and runs an emergency room in Florida.
Dr. Ernoehazy:
Here's the problem that your (quite reasonable) position presents: If you are correct, it means that many people have been medicated inappropriately.
Indeed, if I take your position seriously, it means that a substantial number of human beings--including a disturbing number of children--have been killed iatrogenically.
I am not being melodramatic. It's simply the truth. Standing medical advice for a very long time now has been that if you are HIV+ you go on AZT and other cocktail drugs. Pregnant women especially--and AZT is not just a potent carcinogen, but also a potent teratogen.
Just taking the position you do, you're already saying that doctors have been killing or deforming their patients.
Welcome to the AIDS insurgency.
Pure speculation on my part, but it seems as if you take the money, fear, hype and politics out of the equation, then it's not too hard to analyze it pretty accurately -- as Pournelle and Hogan have.
Hank Barnes
that we can charge people who are responsible for endangering public health with charges of endangerment and bring them up on trial. I think that people like Peter Duesberg belong in jail.
---Mark Wainberg, first researcher to identify and test the drug 3TC as a potential AIDS treatment, holder of several drug patents, and recipient of grants from GlaxoSmithKlein, Bristol-Myers Squibb and Boehringer-Ingelheim.
Hank Barnes
... except, you know, for all the people that doctors have saved in the past ten years.
And how exactly would you tell one from the other?
But you know me, my knowledge is anecdotal.
So, share some of your anecdotes. How many of these friends do you have? How many of them are still alive and taking their cocktails every day?
Seeing someone gain weight and get better back when the cocktails came out is entirely unsurprising, by the way. Coincident with the release of the cocktails was that AZT dosages were cut to a tiny fraction of what they were before the cocktails. AZT casues severe nausea and wasting. Slash the dose of AZT to a tenth of what it was and improvements should be marked. Also, the protease inhibitors, while they all have severe side effects (like heart attack, stroke, and liver failure) do seem effective against certain types of infection, which would also tend to make someone who was very sick seem to get better at first.
So, tell us about your anecdotes. Were these people who were never on AZT before the cocktails? Are these people still alive and, just as important, still taking their drugs every day?
Anyway, the patterns were pretty similar (I volunteered on an AIDS ward and did a series of stories about AIDS back in the 80s; I was also a member of a parish that was predominately gay and that was undergoing a devastating series of deaths during the epidemic; I lived in a house for years that was owned by a gay gentleman who had a lot of HIV+ visitors over the years; I taught with a friend whose brother died): You got sick, you got better, you got sick, you got better, you got sick, you got better, you got sick, you got sicker, you got sicker and sicker and then you finally died. Mike and Bruce were both getting to that pretty sad state which many of us recognized as that last stage of "sicker and sicker." Then, new drug cocktails came out. They got better and put on weight pretty quickly. But this didn't just happen to Mike and Bruce. It happened to a lot of people who came by the house at that time. The ones before the cocktails died; afterwards they lived.
And while I haven't kept in touch with people in that house in the past four years, they were alive and well as of four years ago, and taking their meds as far as I knew. Anyway, back then there had been one funeral after another, but that stopped. So something must've gone right. These guys were not going to see the end of 1995. Everyone knew it. And they were around and fine well through 2001.
It's not a snotty question, it's a genuine one.
I am still pressed for time, and to make matters worse, my blog's having server/access problems...
So pardon me if I seem terse.
In no particular order:
-- Jerry didn't hide my name; you needn't have.
-- Hiding my name and email, when I didn't do so, nor did Dr. Pournelle, seems... melodramatic.
-- I'm not an insurgent; I'm a doctor.
-- Using words such as "insurgency" tends to make you look... melodramatic.
-- There's a theme here.
-- My position is that there's more questions wanting for looking into ... but that doctors are doing the best with the knowledge and information that's out there now. Your tone implies otherwise, and a grumpier doc might take exception.
-- That might, come to think of it, explain the... annoyance... of some of your correspondents to date.
I encourage you... and others reading this... to read the entire letter I sent Dr. Pournelle; I think it conveys my positions with somewhat more precision.
cordially, if not insurgentially,
De Doc
Bill Ernoehazy, MD
dedoc@mac.com
Also, the part I quoted was all that was mailed to me--and actually, I thought YOU mailed it to me!
I went back into my mailbox just now to find it and I see that a reader named Bruce mailed it to me (it was sent via the DW feedback form, which tends to obscure the sender's name somewhat). Your name was on the end and I assumed it was your email signature! When I linked Pournelle's thread I didn't even notice there was more, or that he'd gone ahead and published your name and email address anyway!
So, never mind. I'll edit the piece to put your name back on it. ;-)
But by the way, regardless of my tone, I've heard from enough professionals in medicine who don't want it known that they're skeptical of HIV that it didn't feel odd anyone would want to be private about it. Such skepticism has harmed people's careers. That's not a dark, insidious statement, it's just true. So I assumed that becuase you emailed me... ah, never mind, you get the picture. And when I said "welcome to the insurgency," that was meant to be sarcastic--clearly, you're straddling the fence on this.
But by the way, regarding your point on chimps (which I didn't even see until I just now went back to Pournelle's thread, sorry 'bout that): you should look closer since every virus that gets humans sick gets chimps sick. That's why they're used for that purpose. It's not disingenuous to point out that this is a problem for HIV's defenders--in fact, if I didn't know you to be an honorable man I'd say you were being disingenuous to say that. ;-)
The fact that chimps are so easily infected with any human virus is why they're used for virus testing in the first place: until HIV came along, no one ever found a human virus that didn't make chimps sick too. In their effort to prove HIV causes AIDS, researchers did the standard tests on chimps that they always do to verify a virus theory--and those chimps are still sitting around in a $27 million retirement facility, decades later and still frustratingly healthy.
The notion that this one virus is the sole exception, that it is the only human virus that doesn't make chimps sick when all the others do, demands more than an airy assertion. Those who are skeptical of HIV as the cause of AIDS cannot prove a negative. They can only show where the hypothesis has flaws like this. Those who defend the hypothesis have all the money on their side--tens of billions of tax dollars every year as Dr. Pournelle points out, and they assure us vehemently that there is absolutely no need to spend so much as a dime of it on any alternative hypotheses. I see that as a problem, especially when the HIV hypothesis does have these holes (and its defenders have this habit of demonizing anyone who questions them, literally calling them homophobes, racists, sociopaths who want millions of people to die, and so on. It's quite startlingly ferocious.
When people talk about HIV not being a sole cause of AIDS, it should be made clear whether this means:
"HIV + factor X result in AIDS"
or
"HIV OR factor X result in AIDS"
They're completely different ideas.
If you want to talk about cofactors, that changes the subject, obviously. Then you have to ask what the cofactors are--but just by saying there are cofactors, you've already harmed the original theory (which stated that HIV caused AIDS, period), and you've opened a huge question: how many people who were in no danger got medicated anyway? Because those drugs are all toxic--yes, all of them. Cancer, stroke, heart attack, spinal deformity, fatty tissue deformity, wasting, nausea, liver damage, and more goes along with them.
So what is it. 1%? 10%? 20%? Shouldn't we want to know? Shouldn't patients be told? Because for years now, they routinely have not been.
It's not a snotty question, it's a genuine one.
Dean, they were dying ... dying before and NOT dying after. AZT wasn't killing them; otherwise patients who stopped taking AZT would've gotten better. They didn't. They died of AIDS. Back then people were desperate and they were taking all sorts of drugs. Some went holistic. Some signed up for several experimental treatment. Some did exactly what the scientists told them. And a great many of htem died in a horrible fashion.
That doesn't mean AZT wasn't a nasty piece of work. In the course of fighting this disease, doctors no doubt went down the wrong paths from time to time. That's how science and medicine works. I have no idea if this is true or not with AZT.
What bugs me about this discussion is your theory ultimately rests on bad faith behavior by a hell of a lot of people. Anyone who has treated (or in my case) volunteered on an AIDS ward or had a relative or friend die of this disease really isn't going to have a problem with good faith. AIDS was a horrible way to die. People want to cure it. I trust the medical community to make a good faith effort to do so. And it looks like they've done a great job so far.
That said, apparently in the New York Times yesterday there was a report of a new strain of fast-acting HIV that resists certain drug cocktails. Wonder how that fits in with the AZT, not HIV, kills theory.
I've gone back and looked at some of the papers from 1984 -1985 and even then medical investigators were talking about cofactors. I don't know what the press was saying back then but the idea of cofactors (as in HIV+something else or +many something elses) is not new to the scientific literature.
Dale
Right? That's all you are, right?
So: a simple question:
How many people who did not have any of the cofactors were medicated unnecessarily?
How many, Dale? 1%? 5%? 10%? More?
Click here to look at the data.
So how many were unnecessarily medicated?
How many?
1%? Do you think it was only 1%?
Are you sure it's only 1% or less?
Are you sure?
There is no way of knowing who might have been fine without the meds. In any situation where a drug only partially controls and does not cure a disease, there is always going to be a question about when in the course of the disease is the best time to start the treatment. Wait too long and the person may have already acquired a life threatening infection. Treat too early and perhaps risk the patient acquiring resistance to the drugs. I think the medical establishment is doing the best they can with the available information. Because no matter how you look at it, AIDS patients are living longer now than they did in the 1980s.
I agree though that it would be helpful if doctors knew more about what causes some people to progress quickly to AIDS and what allows some people to remain symptom free for long periods of time. Then you could treat patients in the first category aggressively and just follow patients in the second category until they showed signs of progressing. To some extent that's already being done by recommending patients don't start the drugs until after viral loads and/or T cell counts reach certain threshholds. But there was no way that medical science could know that was the best course when they started treating patients with AIDS. I think the hope was that the antiretrovirals would cure the infection if they were administered early enough.
Dale
Now, I ask you:
I'm a 19 year old pregnant girl, and you tell me that I'm HIV+ and that I must take AZT. And I say "no, I don't think so."
This is not a trivial question, Dale:
Do you get a court order to force me on the AZT?
And:
After my little girl is born, do you force me to put her on AZT, on pain of losing custody of her?
It's not an emotional question. It's a real question. Do you or don't you?
In any situation where a drug only partially controls and does not cure a disease, there is always going to be a question about when in the course of the disease is the best time to start the treatment.
Another option: Whether to give the drug at all. You ignore this.
This is particularly dangerous (ask the folks at Merck about Vioxx), when the doctor ignores known risks about the drug, and has no clue about the long-term effects of said drug.
That's why so many patients actually die from prescribed drugs in hospitals. (See, Lazarou, Incidence of Adverse Drug Reactions in Hospitalized Patients, JAMA 279:15 (1998).)
Hank Barnes
This is going to sound like a cop out but I can't answer your question with a straight yes or no. I am far less certain about how best to treat HIV infection than I am about its existance and causal role in AIDS. But I don't believe that parents should have the authority to make decisions that harm their children.
Having said that; would I vote for a law that allowed authorities to force treatments all the time? No, probably not. To me, the short term benefits have been demonstrated but the long term benefits of the treatments aren't that certain. If I were on a jury being asked to decide on an individual case, I might go along with forcing treatment. It would depend on how good an argument the doctors had in this particular case that this particular baby was at risk of being born HIV positive. It would depend on the attitude of the mother. Is she otherwise responsible about her disease (i.e. does she inform sexual partners she is HIV positive?) and her life in general (will this baby be cared for in a way that will otherwise promote its health?). Does she have other HIV positive children? Is she prepared to have her baby monitored so that it can be treated if it becomes infected with the virus and develops AIDS? Given there are no really good treatments for HIV infection once acquired, I would lean towards doing everything possible to prevent an infection in the first place, i.e. forcing treatment. On the other hand, the current drug treatments haven't been in place long enough to be sure that there won't be long term problems with being exposed to antiretrovirals before birth.
I'd need to know a lot more before I would be comfortable trying to decide what was likely in the best interest of any particular baby.
So, like I said; I don't know the answer to your question.
Dale
Personally, I know several people who'd be perfectly willing to take Vioxx, even knowing the risks, just to have the pain free days they used to have. The medication worked.
The problems with Vioxx, like with the antiretrovirals or many other drugs, is that some fraction of people suffer serious side effects and it isn't clear how to identify those people ahead of time. Nor is it practical to test a drug for 50 years before releasing it to be sure it has no long term side effects.
It's illegal for a medical professional to refuse to treat a patient requesting treatment so whether to give the drug at all isn't really an option. I have yet to hear or read of an AIDS patient with advanced stage disease who didn't want treatment.
Dale
....except for those who died of stroke and/or cardiac arrest --which is why the drug was withdrawn from the market, there are pending investigations by the FDA, Congress, SEC, and Merck has lost $27 Billion (with a "B").
(See, Fortune, November 8, 2004)
"Merck's $27 Billion Heart Attack -- Lawyers are circling. Wall Street is howling. Can the proud drug giant survive the Vioxx mess?"
Barnes
Given that HIV012 was exposed for the fraud that it was, how am I to trust what I am told? Go to NIAID website. They flat out state in their "fact sheet".
AZT produced no serious side effects in mothers or infants. Long-term follow up of the infants and mothers is ongoing.
That's a flat out lie.
What compelling reason do I have to trust any of their data????
I've read all the vertical transmission studies. Every NIH sponsored study touts the reduction of so-called transmission and glosses over any adverse effects on the mother and child. It's damned near impossible to find out exactly what they categorize as "no serious side effects" as they never characterize them. You have to go outside their sponsored studies to other countries or sponsors to find anything that has anything negative to say. That's suspicious on it's face.
The fact that over the last 20 years - every one of their so-called "breakthroughs" has fallen flat on it's face - leads me to only one conclusion. They are so single-minded in their quest to conquer the "HIV enemy" that any and all collateral damage isn't even on their radar screen.
I've been in health care since 1974. We are soldiers on the ground, trying to help people at the direction of our leaders. What are we to do when we suspect our generals are giving us really bad intel?
Like I said in a post to Dean, I am far less certain about the best ways to treat HIV infection than I am about a causal relationship between HIV and AIDS. I have a fairly high degree of faith in the generally good intentions of doctors but a lot less faith in the intentions of pharmaceutical companies. But I've looked at some of the published reports of non-NIH sponsored studies of preventing transmission of HIV to children and to me, the data still looks persuasive. Fewer babies die when HIV positive mothers are treated than when they are left untreated and, treated or untreated, HIV positive babies die much more frequently than the HIV negative babies. The most negative studies I have seen see no difference between treatment and non treatment, which to me indicates the toxicity of the drugs is far outweighed by the problems associated with HIV infection. Are there unreported serious side effects? Possibly; I have no way of knowing. But since side effects can potentially be treated while death can't and since in resource poor countries preventing hiv transmission would still seem to be the best chance of ensuring health of the baby, the drugs may still be considered beneficial. And hopefully better treatments will come along.
Are any of these things consistent with the NIAID statement "no serious side effects"? I ask again - in a world where women are routinely severely chastised for so much as having a glass of wine while pregnant - I'm supposed to believe that chemotherapy is perfectly "safe"??? I'd trust them more if they made a statement saying that the risk of transmission was worse than the risk of an adverse event, but that's not what they say. They flat out LIE in their "Fact" sheet and that seriously disturbs me.
Doesn't it disturb you at all???
If the NIH lied then yeah, it disturbs me and, like I said, I'm not convinced about the best treatments. But I have not seen data that suggests that not treating is better than treating, even given the problems with the treatments. Nor have I seen data in any of these studies that would suggest that HIV is not causing AIDS.
If you have references to such studies, post them and I'll go read them and let you know if they change my opinion.
Dale
Sure, you have -- you just haven't interpreted it that way. Thousands of HIV+ people in the literature, described in Orwellian fashion, as "Long-Term Non-Progressors." The issue is whether these people are taking drugs or not. The ones I've come across periodically don't take any drugs -- and claim, that's the reason they remain healthy.
Nor have I seen data in any of these studies that would suggest that HIV is not causing AIDS.
Are you open to such data, though? What evidence would you need to see that would undermine your faith in the HIV=AIDS hypothesis?
I'm looking at the same data as you -- and I see many conflicting data points, that support each view.
It's a complicated issue, granted.
Barnes
Here's my big issue: patients have not been told the full truth on the AIDS meds. Furthermore, people have been FORCED by the state to take the drugs, or to medicate their children. I find this utterly indefensible given that we know now--know for a fact--that some HIV+ individuals will never develop AIDS, and that we DON'T really know the percentages.
There's this notion of "informed consent" which I believe rather fiercely in, you see.
You won't find them either. No one will even consider doing them. Where's the vested interest in finding out that doing nothing is better than doing something (preferably something you profit from)?
Doing nothing was pretty much what was happening in South Africa up until a year or so ago. My impression was that most people weren't very happy with that approach.
Dale
Barnes
What bugs me about this discussion is your theory ultimately rests on bad faith behavior by a hell of a lot of people. Anyone who has treated (or in my case) volunteered on an AIDS ward or had a relative or friend die of this disease really isn't going to have a problem with good faith. AIDS was a horrible way to die. People want to cure it. I trust the medical community to make a good faith effort to do so. And it looks like they've done a great job so far.
My eye went right past this. My apologies to you (and I hope you're still reading this thread).
Let me be clear about something: my view does not rest on bad-faith behavior by most people. Bad-faith by an extremely small group of people (Robert Gallo, Anthony Fauci, and a few others) but otherwise, nothing but well-meaning people doing the best they could to help dying people.
That said: you assert that no one was sick before they went on AZT. Many anecdotal reports which you can read about right here state that this is flat-out untrue: many people were NOT sick until they went on the meds. And some of them are claiming that not only were they not sick before they were medicated, BUT, that they got better after they decided to STOP the meds.
So let me hit you with this concept, and you tell me what you think:
Pretend that HIV does not cause AIDS. Pretend that SOMETHING ELSE does. We will leave open what does cause it, but HIV is not it. Maybe it's another virus. Maybe it's lifestyle issues. Maybe it's a germ no one's identified yet. Whatever it is, it is NOT THIS SPECIFIC VIRUS.
Or, maybe it IS this specific virus, but this specific virus requires cofactors before it can do its dastardly work.
Just pretend for me for the moment that it is not THIS SPECIFIC VIRUS, or that this specific virus REQUIRES COFACTORS.
If that were true, how would it be different from what we see now?
And: Would you still support forcing children onto cocktail drugs?
I only believe that bad faith is required of a very, very few people, and that everyone else has simply made good-faith efforts based on what they were told.
I utterly reject conspiracy theory thinking.