My Issue With Early & Aggressive Treatment Of HIV...

[GermanFucker]

I've seen bad doctors over and over and over. Bad doctors are the rule, not the exception. It's one of those "fool me once, shame on you - fool me twice, shame on me" scenarios. I now think for myself and on major stuff I stop and consider their recommendation and see if it's right for me.

I've been to truly horrible doctors. But exactly because I do think for myself and had enough Latin in school to actually read pubmed articles, I am able to find the right doctors for me and discuss the issue in a matter-of-fact way.

Your tin foil hat mom is actually close to the truth. Vaccines are one of the leading theories for the dramatic rise of autism. However sensible folk aren't against vaccines all together - instead they want to tweak the timing of vaccines. Some vaccines can be given a little later, when the child's body is a bit more mature and that delay means there's far less side effects. Case and point - I went to military doctors my entire life. When I was a teen it came out that a certain vaccine could be dangerous if given to children too early. My mom looked at my vaccine record and saw that military doctors knew (or suspected) the danger 10+ years before the general public and had delayed giving me that particular vaccine. That's not tin foil hat - it's prudent medicine.

Sorry, but the autism nonsense has been solidly debunked. Especially because most of the tin foil hat crowd trace their argument to one study done by Mr. Wakefield, which is a known fraud (just google "wakefield fraud"). There is no solid empirical evidence (meaning significant statistical deviations) linking vaccines and autism. But even if there were (which there isn't), it's still preferable to the letality of so called childhood illnesses.

Just a few towns over from where I live a thirteen-month-old boy recently died of measles, contracted when he was a few days / weeks old at a doctor's office, because another child wasn't vaccinated. One of the other children in the waiting room has also gotten SSPE encephalitis. The death rate is especially high for those who contract measles under the age of one. (Does that mean that all vaccines are perfectly side-effect-free? No. It just means that in the case of measles there are empirical reasons for vaccinating)

Sometime so called common sense (if it is called a childhood illness it must therefore be harmless) can indeed mislead. That's why we need to take a sober, fact-based non-paranoid approach.

Edited January 10, 2012 by GermanFucker

[GermanFucker]

cont.:

The problem with your argument is that you rely on analogies (like that of the social worker), while not being able to empirically support your thesis. The fact that you can respect a certain position says nothing whatsoever about its efficacy. You are a critical thinker and question authority. But to be able to be authoritative yourself you need to be able to supply a better theory, including research and data and all.

[SpunkJunkyPissHound]

Like many long term "non-progressers", I did not go on meds for almost 20 years, until after being diagnosed with a common form of lymphatic cancer common among those who've had the bug more than 18 years: first, because in the US, I had no access to affordible health insurance, and second because I saw so many good friends die not because of HIV but by the Damage caused by AZT. The ongoing rejection of co-factor research and the emphasis on HIV-centric treatment is also particularly troubling. A recent report at the World AIDS Conference said that people who take their med's rigorously and puctually are much more like to develop drug resistant strains, but still we're being told that if we don't do it every 8, 12, 24 hours, we'll die- the same fear based sales technique used when back when they when AZT was the only game in town.

[rawTOP]

The problem with your argument is that you rely on analogies (like that of the social worker), while not being able to empirically support your thesis. The fact that you can respect a certain position says nothing whatsoever about its efficacy. You are a critical thinker and question authority. But to be able to be authoritative yourself you need to be able to supply a better theory, including research and data and all.

In 1994 I watched as a nurse administered some incredibly powerful medications to my HIV positive boyfriend in the wrong order. I had been told by the doctor the order was important and questioned the nurse, but she insisted she was right and I was wrong. I didn't stop her and when I woke up in the morning my boyfriends heart was racing - it had been racing for hours. The doctor said he had essentially run a marathon in his sleep. That incident was the beginning of the end for him. He never got back to anything close to healthy and died a couple months later. I have to ask myself if I had stood up to the nurse and insisted a doctor confirm the order whether he'd still be alive today.

In 2003 my friends said my neurosurgeon (the chief of neurosurgery at MSKCC) looked deeply disturbed when he finished doing my second "brain tumor" biopsy. We're convinced something went wrong and my life was in danger - all for an operation that wasn't really necessary.

My brother-in-law is now a ghost of the vibrant, fun-loving person I looked up to as a kid and I suspect his medical issues are due to over aggressive medical treatment.

I've worked on the marketing of drugs that caused such serious problems that they're now banned by the FDA. I saw first hand how pharma companies identified, recruited and trained "thought leaders" to get those drugs accepted. I've helped organize the dinner meetings and ski resort vacations to influence those thought leaders. And I've seen in my own experience how reluctant doctors are to question those thought leaders.

Exactly how many people do I need to see put at risk and hurt before I say "enough" and have the right to question doctors? I don't have to be a scientist to use common sense and demand that medical authority figures genuinely do what's best for me and the people I love. A one-size-fits-all approach is becoming the dominant treatment plan for HIV and one size doesn't fit all.

[HungLatinDom]

" A recent report at the World AIDS Conference said that people who take their med's rigorously and puctually are much more like to develop drug resistant strains,"

I am really interested in that. Can you send a link, please?

[GermanFucker]

Exactly how many people do I need to see put at risk and hurt before I say "enough" and have the right to question doctors? I don't have to be a scientist to use common sense and demand that medical authority figures genuinely do what's best for me and the people I love. A one-size-fits-all approach is becoming the dominant treatment plan for HIV and one size doesn't fit all.

With all due respect - and I do hope that we can have a intense discussion without there being any bad blood - your arguments are designed to discredit medicine in general without saying much about the question at hand. Namely, as TonyRedux pointed out, that the new consensus seems to be based on empirical data, namely that starting ARV treatment early seems to have a positive effect on the overall longterm health of those living with HIV. One of the reasons might be that early treatment restores resting memory B cells to the same level as that in HIV-uninfected men, but late treatment does not. Early ART reduces the proportion of immature B cells to the same level as that in HIV-uninfected men, but late treatment apparently does not. Instead, with late treatment the number of exhausted B cells is higher. As a result, studies suggest, early ARV significantly improves the body's pathogen-fighting capabilities, resulting in fewer illnesses and reduced mortality (e.g. approx. half as high when starting above 500 T cells compared to starting below 350).

IMHO that is what a discussion about early ARV needs to be about and serious arguments need to adress and / or be weighed against that. I realize that it is kind of heartless just to brush away anecdotal evidence, especially when it is as tragic as your dead boyfriend. But in the same way I don't expect my anecdotal evidence to the contrary to be taken as the gold standard.

However, if I e.g. have to choose between your four examples (incompetent nurse, incompetent neurosurgeon, non-HIV related medication, marketing) and e.g. Kitahata's study of 17,000 poz patients, the latter - despite its (moderate) flaws - carries significantly more weight.

I think everyone should be able to make an informed decision, but for that you need dependable information, and your kind of emotionally invested activism IMHO doesn't qualify (The study about therapy compliance and resistance on the other hand would be pertinent.).

[rawTOP]

incompetent neurosurgeon

You just called the chief of neurosurgery at Memorial Sloan Kettering incompetent... Being German, perhaps you're not aware of MSKCC's significance... It, and Mayo Clinic, are the two top cancer hospitals in the US. It's easily one of the top 5 cancer hospitals in the world. And the guy was the head of neurosurgery at one of those hospitals. He was not incompetent. He just did an unnecessary neurosurgery on me and should have questioned my neurologist more carefully before doing it. But given that my neurologist was the chair or neurology, he didn't question her request for the biopsy.

Kitahata's study of 17,000 poz patients

I'd actually like to see the study. The issue with large sample sizes is that everything becomes statistically significant. At that point you have to ask yourself if it's meaningfully significant. If it just makes a small but positive improvement in life expectancy, I personally would prefer to live fewer years with less chance of drug side effects. That's a perfectly reasonable decision for me to make and doctors should spell out the choice clearly for patients.

I'm done arguing the other points. I've pretty much covered everything that I can think of saying...

[GermanFucker]

You just called the chief of neurosurgery at Memorial Sloan Kettering incompetent... Being German, perhaps you're not aware of MSKCC's significance... It, and Mayo Clinic, are the two top cancer hospitals in the US.

My point was rather that talking about neurosurgery misses the point. I've had personal experiences with 2 bad general practitioners, a truly abysmal dermatologist, a gifted general practioner specializing in SEM (Sport and Exercise Medicine) and a brilliant neurosurgeon. But all of these experiences say nothing about when to start HIV treatment.

I'd actually like to see the study.

Abstract via Google: www.nejm.org/doi/full/10.1056/NEJMoa0807252

If it just makes a small but positive improvement in life expectancy, I personally would prefer to live fewer years with less chance of drug side effects. That's a perfectly reasonable decision for me to make and doctors should spell out the choice clearly for patients.

Kitahata's main focus is mortality. But the study finds that "starting therapy at progressively higher CD4+ counts has been shown to LOWER the risk of some toxic effects associated with antiretroviral therapy, including peripheral neuropathy, anemia, and renal insufficiency.", while admitting that "all the potential side effects of long-term antiretroviral therapy are unknown.". In other words: From what is known, waiting increases your chance of drug side effects rather than the opposite. But on the grand scale it again becomes about weighting known benefits vs. unknown risks, which should be the informed decision of the individual.

[rawTOP]

Abstract via Google: www.nejm.org/doi/full/10.1056/NEJMoa0807252

Kitahata's main focus is mortality. But the study finds that "starting therapy at progressively higher CD4+ counts has been shown to LOWER the risk of some toxic effects associated with antiretroviral therapy, including peripheral neuropathy, anemia, and renal insufficiency.", while admitting that "all the potential side effects of long-term antiretroviral therapy are unknown.". In other words: From what is known, waiting increases your chance of drug side effects rather than the opposite. But on the grand scale it again becomes about weighting known benefits vs. unknown risks, which should be the informed decision of the individual.

Sorry, but that study has serious problems. The biggest one is that they didn't spell out the characteristics of the people who died. I've seen other studies that say that when you look at just the people who actually die of AIDS you see that the vast majority of them 1) didn't start ARVs until their CD4 dropped below 200 and/or 2) had drug abuse or other issues that meant that they didn't take their meds consistently once they did start treatment.

The first part of the study where "early" is defined as CD4 between 350 and 500 - we're in agreement there - that seems like a reasonable time to start to me. It's the second part of the study where I see problems. They should have sorted the participants into 3 groups, not 2. By mixing the people with really low CD4s with people with reasonable CD4s they're giving a distorted picture. Notice that they don't give mean CD4 counts for each group - they only give median and inter quartile ranges. That means you can't tell how dire the lowest quartile is - that could be where a large part of the deaths are.

The other thing which is a huge red flag is the 95% confidence intervals - with up to 9,000 people in the study they should have been a lot smaller. Something fishy is going on there. That indicates to me that they're using the unusually large sample size to help them tell a story that isn't really there.

On top of that - they only know the cause of death for 16% of those who died. It could be random bad luck that's causing the deaths. If, as other studies have shown, poverty and drug addiction keep people off ARVs - then it could just be that poor people are more likely to die. I mean, they do some analysis of how other factors like Hep C and IV drug use factor in - but unless they can tie the deaths back to HIV in some way, it really weakens the results. As they mention, this was not a randomized trial - there could be a variety of cofactors that determined when the person chose to start ARV treatment.

This isn't tinfoil hat... Very particular details are missing from the study. It baffles me how they could not discuss the characteristics of the people who died. That's the outcome variable. Comparing people who dies to people who didn't die is far more important than looking at the differences between two arbitrarily defined groups.

I've heard it said that numbers don't lie, people lie with numbers. The results of that study are crafted in a very particular way to give the message that the drug companies want told. First, they wanted to get people on ARVs when they were in the 350-500 CD4 range - no problem there. But then they went further - to try to get people on drugs years before they may actually need them.

I'll end by listing the drug company affiliations of the researchers - they speak volumes...

Dr. Saag reports receiving consulting fees from Ardea Biosciences, Avexa, Boehringer Ingelheim, Bristol-Myers Squibb, Gilead Sciences, GlaxoSmithKline, Merck, Monogram Biosciences, Pain Therapeutics, Panacos, Pfizer, Progenics, Roche Laboratories, Tibotec, Tobira Therapeutics, and Vicro and research support from Achillion Pharmaceuticals, Avexa, Boehringer Ingelheim, GlaxoSmithKline, Merck, Panacos, Pfizer, Progenics, Theratechnologies, and Tibotec; Dr. Hogg, receiving grant support from Merck; Dr. Deeks, receiving consulting fees from GlaxoSmithKline, Roche, Gilead, and Boehringer Ingelheim and grant support from Merck, Gilead, Bristol-Myers Squibb, and Pfizer; Dr. Eron, receiving consulting fees from Tibotec, Bristol-Myers Squibb, Merck, GlaxoSmithKline, and Pfizer, lecture fees from Roche, Bristol-Myers Squibb, Tibotec, and Merck, and grant support from GlaxoSmithKline, Merck, and Boehringer Ingelheim; Dr. Gill, receiving consulting fees from Gilead, GlaxoSmithKline, Abbott, Merck, Boehringer Ingelheim, Tibotec, and Pfizer and grant support from GlaxoSmithKline, Abbott, Tibotec, and Pfizer; Dr. Klein, receiving consulting fees from GlaxoSmithKline, Abbott, Pfizer, and Boehringer Ingelheim, lecture fees from Abbott, Gilead, Tibotec, Bristol-Myers Squibb, and GlaxoSmithKline, and research support from the Canadian HIV Trials Network, the Ontario HIV Treatment Network, and Schering-Plough Canada; Dr. Rodriguez, receiving consulting fees from Gilead and Bristol-Myers Squibb, lecture fees from Bristol-Myers Squibb, and grant support from STERIS; Dr. Rachlis, receiving consulting and lecture fees from GlaxoSmithKline, Abbott, Merck, Pfizer, Bristol-Myers Squibb, Gilead, and Tibotec and grant support from GlaxoSmithKline, Tibotec, Boehringer Ingelheim, Abbott, Merck, Pfizer, and Roche; Dr. Horberg, receiving grant support from Gilead, Abbott, and Bristol-Myers Squibb; Dr. Silverberg, receiving grant support from Pfizer, Merck, Gilead, the Universitywide AIDS Research Program, and Community Benefit/Kaiser Permanente; Dr. Gebo, receiving consulting fees from Tibotec and grant support from the Johns Hopkins University Richard Ross Award; Dr. Benson, receiving consulting fees from GlaxoSmithKline, Pfizer, Merck, and Achillion and grant support from Gilead; Dr. Collier, receiving consulting fees from Merck, Pfizer, and GlaxoSmithKline and grant support from Schering-Plough, Tibotec-Virco, Gilead, Koronis, and Merck and having an equity interest in Bristol-Myers Squibb and Abbott; and Dr. Moore, receiving consulting fees from Bristol-Myers Squibb and GlaxoSmithKline, lecture fees from Gilead, and grant support from Pfizer, Merck, and Gilead.

"Consulting & Lecture Fees" are given to people who market drugs to other doctors. I know, I've helped recruit and pay the doctors.

Bottom line - this is a drug company study passed off as legitimate research and you accepted it as fact. This is exactly what I've been ranting about in this thread.

[GermanFucker]

Bottom line - this is a drug company study passed off as legitimate research and you accepted it as fact.

Which is why I was the first one to mention its flaws... [/sarc]. Because I do know how to read studies. What I said was that I prefer - albeit flawed - on-topic information above non-related analogies. My point is: Yes, the flaws of such studies are pertinent and relevant and its worthwhile discussing them. As I would like to discuss the flaws of studies to the contrary. Because that is what an informed decision about HIV treatment it's about. Not about neurology, not about vaccinations.

[rawTOP]

Which is why I was the first one to mention its flaws... [/sarc]. Because I do know how to read studies. What I said was that I prefer - albeit flawed - on-topic information above non-related analogies. My point is: Yes, the flaws of such studies are pertinent and relevant and its worthwhile discussing them. As I would like to discuss the flaws of studies to the contrary. Because that is what an informed decision about HIV treatment it's about. Not about neurology, not about vaccinations.

IMHO, it's not helpful to quote or discuss deeply flawed studies where you can't really tell the truth of the matter. It just confuses people and muddies the discussion when you don't see a clear picture.

[TonyRedux]

Sorry, but that study has serious problems. The biggest one is that they didn't spell out the characteristics of the people who died. I've seen other studies that say that when you look at just the people who actually die of AIDS you see that the vast majority of them 1) didn't start ARVs until their CD4 dropped below 200 and/or 2) had drug abuse or other issues that meant that they didn't take their meds consistently once they did start treatment.

The first part of the study where "early" is defined as CD4 between 350 and 500 - we're in agreement there - that seems like a reasonable time to start to me. It's the second part of the study where I see problems. They should have sorted the participants into 3 groups, not 2. By mixing the people with really low CD4s with people with reasonable CD4s they're giving a distorted picture. Notice that they don't give mean CD4 counts for each group - they only give median and inter quartile ranges. That means you can't tell how dire the lowest quartile is - that could be where a large part of the deaths are.

The other thing which is a huge red flag is the 95% confidence intervals - with up to 9,000 people in the study they should have been a lot smaller. Something fishy is going on there. That indicates to me that they're using the unusually large sample size to help them tell a story that isn't really there.

On top of that - they only know the cause of death for 16% of those who died. It could be random bad luck that's causing the deaths. If, as other studies have shown, poverty and drug addiction keep people off ARVs - then it could just be that poor people are more likely to die. I mean, they do some analysis of how other factors like Hep C and IV drug use factor in - but unless they can tie the deaths back to HIV in some way, it really weakens the results. As they mention, this was not a randomized trial - there could be a variety of cofactors that determined when the person chose to start ARV treatment.

This isn't tinfoil hat... Very particular details are missing from the study. It baffles me how they could not discuss the characteristics of the people who died. That's the outcome variable. Comparing people who dies to people who didn't die is far more important than looking at the differences between two arbitrarily defined groups.

I've heard it said that numbers don't lie, people lie with numbers. The results of that study are crafted in a very particular way to give the message that the drug companies want told. First, they wanted to get people on ARVs when they were in the 350-500 CD4 range - no problem there. But then they went further - to try to get people on drugs years before they may actually need them.

I'll end by listing the drug company affiliations of the researchers - they speak volumes...

"Consulting & Lecture Fees" are given to people who market drugs to other doctors. I know, I've helped recruit and pay the doctors.

Bottom line - this is a drug company study passed off as legitimate research and you accepted it as fact. This is exactly what I've been ranting about in this thread.

since studies such as that ARE being used to rationalize earlier treatment, y not publicize ur analysis n critique more broadly in journals where u would face reasoned rebuttal AND where those who rebutted u would have to disclose any conflicts of interest they may have?

[GermanFucker]

First of all I quoted the study as an example of my personal way of weighting information, namely that because can read and UNDERSTAND studies, I will prefer a flawed study over non-related analogies. Because I can distill some information out of it and / or dismiss the rest. Because it is flawed I did not introduce Kitahata as proof of anything. My personal opinion on the topic is based on a variety of sources, and I would e.g. rate B-cell health above simple mortality as a critierion.

I personally find that arbitrary analogies are much more confusing and problematic for the discussion as they present some things as equal which in reality - being non-related and all - they are not. Especially when used on the feeble-minded, analogies are a powerful tool of disinformation creating the illusion of understanding the subject at hand via the analogy when in fact one just understands the analogy without being able to evaluate the correllation between the subject and the analogy used to describe it.

Discussing specifics is always hard. In the worst case the other person can arbitrarily raise the bar on what he accepts as evidence however much work you put into an argument. Using analogies thus is a way of staying aloof: Noone can disprove you if you don't get into specifics.

In the end I only want to point out where you put words in my mouth by contrasting them with what I actually said. As to the question of this thread: Everyone should make up his own mind. Someone grappling with the question should NEITHER take my NOR your word for it (especially because we're both neg and thus talking out of our asses). I have NO DESIRE whatsoever to influence others when it comes to their health choices.

I just want to fuck. I love banging muscle ass and seeding 19-year-olds. In my personal opinion it should be about the unsafe sex. And just because I fuck bareback that doesn't mean I take drugs or have an HIV fetish or that I'm anti-medicine. I have no agenda and I'm not shopping for one, either. I just like fucking the way god intended.

[rawTOP]

since studies such as that ARE being used to rationalize earlier treatment, y not publicize ur analysis n critique more broadly in journals where u would face reasoned rebuttal AND where those who rebutted u would have to disclose any conflicts of interest they may have?

Because, as you know, I have other things that keep me busy. I care, but not that much...

[rawTOP]

First of all I quoted the study as an example of my personal way of weighting information, namely that because can read and UNDERSTAND studies, I will prefer a flawed study over non-related analogies. Because I can distill some information out of it and / or dismiss the rest. Because it is flawed I did not introduce Kitahata as proof of anything. My personal opinion on the topic is based on a variety of sources, and I would e.g. rate B-cell health above simple mortality as a critierion.

I personally find that arbitrary analogies are much more confusing and problematic for the discussion as they present some things as equal which in reality - being non-related and all - they are not. Especially when used on the feeble-minded, analogies are a powerful tool of disinformation creating the illusion of understanding the subject at hand via the analogy when in fact one just understands the analogy without being able to evaluate the correllation between the subject and the analogy used to describe it.

I'll take my "feeble-minded analogies" over purposely deceitful "research" any day.