Google
WWW AIDSMYTH.BLOGSPOT.COM

Saturday, October 27, 2007

An example of how AIDS denialists are their own worst enemies...

As many readers may already know, the BBC has issued an apology for the errors and bias in their story "Guinea Pig Kids", which was an AIDS-denialist inspired film detailing alleged abuses due to allowing foster kids into pediatric anti-HIV treatment studies. The facts were that the kids were faced with study medications (already proven safe and effective in adults) or nothing. These studies and others like them paved the way for current standard-of-care in treating pediatric HIV infection. No-one died as a result of the trials. A full investigation by the New York State department of health found issues only with incomplete documentation, and revealed that these were common at a national level. On that topic at least the program perhaps did a service, but that was hardly the point the denalists were trying to make.

The denialists would have you believe that not only are the meds too toxic to use (a commonly believed myth - also discussed here) but that the Incarnation Childrens Center forced the kids into "experimental" (implying "untried") treatment regimens, took kids away from their parents if they didn't comply with study requirements, and used inhumane procedures purely to enforced study drug compliance.

I was among several people who helped formulate a complaint to the BBC about this story, and I've been critical of the ringleader's "scientific journalism" for some time (a certain Liam Scheff, who is already whining about having had his masterpiece dismantled). If Liam were actually correct about any of the accusations he made he would stand to be held up an a hero. Instead he has succumbed to believing the same tired denialist lies and misrepresentations as the other dissident sheep, and thrown in a good handful of his own scientific errors for good measure, to further muddy the water of respectable scientific debate and public education.

Speaking as one from the inside, the most amusing thing is that the AIDS Denialists were to some extent their own worst enemy. After AIDSTruth complained to the BBC (and made it public they had done so) one of the core denialist groups posted a press release asking the BBC to reject the complaint! As it happens, the BBC was dragging its feet over the whole thing and we had to push to get the complaint moved up the management chain. One factor that was part of the slow move was making the point that the documentary was denialist-inspired and led. By issuing the press release ironically the denialist movement neatly proved this point for us :o)

The key points from the BBC's apology are:

  • Rasnick's discussion on AZT's toxicity was misleading, contrary to current medical opinion, and was not balanced by the programme makers.
  • The links made between loss of custody of kids (usually already in foster care) and enrollment in clinical research were unsubstantiated, in at least one case clearly false, and certainly misleading.
  • The claims made that antiretroviral therapy would adversely affect childrens' health were judged to be false.
  • The program was biased towards AIDS denialism.

Sadly they didn't uphold all complaints - specifically for me the issue where Vera Sherav asks "why didn't they provide the children with the current best treatment?". Honey, the "current best treatment" was nothing. The BBC lost the plot with that complaint, focusing instead on whether or not the children were taken advantage of due to their socially vulnerable status. In either case, their website and video clearly give the misleading impression that the studies did indeed target vulnerable children. "The experiments continue to be carried out on the poor children of New York City." ends one page. Disgusting. The BBC is supposed to be held up as an international standard of journalistic excellence and integrity - but when they do little to no fact-checking and resort to sensationalist stories for viewing figures they only serve as an example of how NOT to do good reporting.

The BBC is still arguing over what to do about this. Will heads roll? Will the video and websites finally get taken down? Discussions are ongoing "at the highest level". We'll see.

8 Comments:

Blogger tluv said...

Dear Nick,

From a link you give us, Liam writes, "These kids are force fed drugs through surgically-implanted tubes when they refuse drugs."

Is he lying?
Is any part of his statement true?
What is your opinion?


Sincerely,
Travis

2:07 PM  
Blogger Bennett said...

Good question.

The difficulty is that there is no evidence to support his statement. One might as well say "the moon is made of cheese" and leave it to the reader to disprove it.

It is _possible_ that in kids with feeding issues they would be given a G-tube or something similar to assist with nutrition. This is standard of care, otherwise they would starve to death. In that situation some meds might be given through the tube. However it isn't even clear if that was done for feeding issues.

A clinical trial research protocol will not mandate forced dosing in any form, because it makes no sense ethically or scientifically - least of all requiring a surgical intervention to enforce dosing. This fact (and it is a fact) is enough to make me think that he's either lying or badly misunderstanding or misrepresenting the truth. You have to remember that these studies were not done at ICC in isolation - they were national studies, overseen by multiple layers of safety review, and any such events would have sparked a massive investigation years ago (clinical trials are monitored every few weeks to months).

He might like to think that AIDS researchers would do that, but then he is an AIDS denialist with pre-conceived notions of how AIDS science works, and so will believe anything that will fit his world view.

He might even have been told such things, and is "merely" reporting them, but in that case it's worth noting that his source was a disgruntled employee who was fired from the job, and who wouldn't have necessarily understood all that was going on in any case (she was not a medical practitioner). By "merely" reporting lies he is being a very poor reporter.

So the bottom line is that he can't prove that any part of his statement is true, but at the same time there's no evidence to prove that he's lying - only that it would have to be against all rational clinical research protocols. I know where the balance of probability lies in my mind.

Cheers

Bennett

2:25 PM  
Blogger tluv said...

Dear Bennett,

Thank you for the last reply.

In that reply you said, "The difficulty is that there is no evidence to support his statement."

Would you consider a statement from ICC’s medical director Dr. Katherine Painter as evidence?

The statement I refer to is taken from an October 2003 interview Liam did with Katherine.

"LS [Liam]: So, … uhh… you’ll forgive me.. I’m not a surgeon. it makes me a little grossed out but, um, uh, now so if a kids refusing to take, or won’t take or can’t take the medication, they might get one of these [surgically-implanted gastrostomy tubes].

Dr. Painter: Mm hmm, in some cases."

Sincerely,
Travis

6:19 PM  
Blogger Bennett said...

Now that's actually an interesting quote, but it's clear that she's not suggesting forcing the kids to take meds with some kind of draconian measure - and consent would have to be obtained, albeit from the state guardian if the kid's in foster care.

Interestingly, on one of Liam's websites he lists the following study as proof that G-tube use is widespread. PEDIATRICS Vol. 105 No. 6 June 2000, p. e80

I found the paper interesting because it proves that HAART therapy saves lives and that G-tubes, if and when they are used for nutritional reasons as well as medication issues, are associated with better outcomes. He can't cherry-pick the literature to suit his agenda (G-tubes are bad) while ignoring the same literature when it disagrees with him (by showing that HAART is good)!

It's also interesting because it was a study _specifically_ aimed at whether or not G-tubes could be used for assisting with medical compliance (i.e. it's not saying that it was standard of care at the time!)

Interestingly I don't know of any kids with HIV who have G-tubes. And it's also clear that he hasn't worked with kids who have G-tubes (and I know many who do for other reasons). His opinion of them would be laughable if it weren't so tragic.

Liam doesn't highlight the fact that the kids do better when on the meds (he claims the opposite in fact when the science shows us that more kids die when they take fewer or no meds). Liam also ignores the fact that unlike "people who do well on naturopathic regimens", LTNP's, kids with HIV get quite sick with clear immune damage (low CD4 counts, or OI's). His argument is that the meds make the immune damage, when all the scientific literature shows that the immune damage comes first, prior to therapy, and is reversed with therapy. The references for all this are on this blog.

Because he is coming from a position of falsehood, his thinking is clouded and biased. I find it astonishing that he chooses to ignore such a vast repository of information that contradicts him, and that he still believes that the meds are somehow more lethal than chronic untreated HIV infection.

Liam was told the truth by Dr Painter when she also said that hepatitis and drug use don't cause false positive HIV tests, and that HIV is a lethal infection (if untreated). Why didn't be believe her then, but take her word (and take it further than she clearly meant) about G-tubes.

Ask yourself that, and ask yourself whether Liam was being liberal with the truth.

I prefer to call it lying.

Bennett

8:24 PM  
Blogger tluv said...

Bennent,

You ask (and perhaps rhetorically, but I'd like to answer):

"Liam was told the truth by Dr Painter when she also said that hepatitis and drug use don't cause false positive HIV tests, and that HIV is a lethal infection (if untreated). Why didn't be believe her then, but take her word (and take it further than she clearly meant) about G-tubes."

My answer:

Liam has a different opinion about HIV and that's why he didn't believe what she said about HIV tests and infection, even if his opinion is false.

On the other hand, she wasn't stating an "opinion" about HIV when she answered his question about g-tubes. She answered yes to a question about what she has seen with her own eyes as the primary care physician at ICC.

From an interview about medication adherence:

"LS [Liam]: So, … uhh… you’ll forgive me.. I’m not a surgeon. it makes me a little grossed out but, um, uh, now so if a kids refusing to take, or won’t take or can’t take the medication, they might get one of these [surgically-implanted gastrostomy tubes].

Dr. Painter: Mm hmm, in some cases."

That's my guess why he didn't believe her about HIV but believed her about g-tubes.

Of course, people have expressed different opinions about "kids [who] are force fed drugs through surgically-implanted tubes when they refuse drugs" as either "draconian" or "lifesaving," even if "consent would have to be obtained, albeit from the state guardian if the kid's in foster care."

Travis

(sorry if you get this twice.)

11:48 PM  
Blogger Bennett said...

But it's not her "opinion" about the tests, it's the truth. That's the underlying problem with many of the denialists - they think that it IS all about opinion, and complain about science "only" having theories, as if a theory is somehow less important. Her "opinion" is the truth, Liam's "opinion" is falsehoods. Therefore when he takes the path of least resistance and fails to educate himself because of his own beliefs that is willful ignorance, which is the one thing that annoys me most of the denialists. They choose NOT to be educated and corrected. If they were simply ignorant of the facts but willing to learn, all is good!

I'll remind you as you sit on your chair and type that gravity is what's keeping you there and no-one knowns how that works either, but there are plenty of theories ;-)

I was reminded of an example last night as different opinion about medical tests and procedures, as I talked about the possibility of performing a lumbar puncture on a 2-month old child with a fever. By the look of the kid's mother you would think I was suggesting cutting off a limb, but if I thought the child was truly sick then the LP would be a necessary and potentially life-saving procedure, which it is. Opinion does not equal truth.

Incidentally, I have debated with several people who have said precisely that, that one person's experience or opinion is "as true" as a well run research study. That just seems ludicrous to me, as if the story of one person can be used to discredit the stories of tens of thousands... I think a big problem there is getting people to appreciate risk, but that's a whole new topic.

I think you're right, Liam has a different opinion and that's why he didn't believe her.

But why is a journalist who is supposed to be reporting the news putting their personal opinions into the report? That's called BIAS. It's why Fox news is made fun of so much, and why the BBC is facing so much trouble in the UK at the moment (Guinea Pig Kids is just the latest in a line of similar mistakes). Bias and personal opinion has no place in reporting the news, but sadly occurs far too often. AIDS denialism, as with other pseudoscientific crusades, does this with abandon.

Cheers

Bennett

2:54 PM  
Blogger sadun said...

"...But why is a journalist who is supposed to be reporting the news putting their personal opinions into the report?..."

Should he have put your opinion in it? His opinion is based on the research of a group of scientists, which are -he believes- more aware, questioning and honest.
What you are saying is like he shouldn't listen to a whistleblower from the CIA, if the rest of the CIA denies what he is saying.
We've seen the results of mass media ignoring whistleblowers, look at where the USA is today: The Government,CIA,NSA and FBI... all completely corrupt. I suspect it is the same with NIAID, WHO and all those... You should begin questioning your own reality as soon as possible. Try reading John Perkins' "Confessions of an Economic Hitman", you can also find his videos at youtube/googlevid.
I hope it motivates you to reconsider your views...

2:41 PM  
Blogger Bennett said...

Sadun,

The problem, for Scheff, is that none of the critics of HIV which he believes have ever done any real research on HIV or AIDS. They are great for armchair-science and hand-waving, but haven't actually looked at the issue themselves. Their comments clearly show that they have very little true understanding of HIV biology or AIDS epidemiology or pathology. In some cases they fail to show evidence that they understand basic virology or medicine.

By all means _listen_ to whistleblowers. Sometimes they are the only way to break through corruption. But if you're going to believe them at least do it for a good reason, and report the issue not your interpretation of it.

Like Scheff, you clearly have a paranoid concern over institutions like the NIH and NIAID, purely it seems because they are large institutions. As if individuals are somehow more trustworthy...

As others who know me well can testify, I already questioned my belief in the HIV/AIDS paradigm several years ago. Unfortunately I was presented with such atrocious idiocy on behalf of the AIDS denialists/dissidents that they convinced more than ever that they were horribly and tragically misguided. I am in that respect a "born again" AIDS orthodox scientist and clinician - so don't dare lecture me on rethinking ;-)

Bennett

2:57 PM  

Post a Comment

<< Home